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.


    

  
 




 

 
 
 
 
 
 
 



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Comments

  1. This is incredibly inspiring! It makes me so proud to see people with invisible illnesses being so strong and true to themselves. Your love story sounds truly beautiful. It's so great that you have found such happiness in another person, it makes all the rest so much easier! All the best!

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    Replies
    1. Thank you so much for your sweet comment and encouragement! God is so good, even in our roughest of times! :)

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