A Crown with Curves
 

This is who I am!!
 
I was born one of 6 girls. I was diagnosed almost immediately with a rare                                          form of Muscular Dystrophy, now called Spinal Muscular Atrophy (SMA).                                            I have type 2 . It was easier for my diagnosis to be discovered because my                                    parents had already had 2 other daughters with SMA.
 
I was raised just like any other child, other than I went to school in a larger town near my home in order to get physical therapy. I was studying in what was then considered mainstream.  That simply meant that I was schooled with other children who did not have disabilities. School was pretty easy for me academically, but it certainly had its challenges for me trying to live with a disability amongst other children without.

I made certain that my high school years would be with my neighboring kids at the local high school. I went on to study at a State college about an hour drive from home. College was a whole new world to me. It was a chance to meet new people. I felt like these new peers, friends, didn't even know I was                                     disabled, which is completely ridiculous considering I use a motorized wheelchair                               for a 100% of my mobility.  I was so confident, especially because I was only just                                18. By that point, my disability had progressed significantly.  However and                                         needless to say, this didn't hold me back a bit.  

                             I remember feeling a little lost when it came time to declare a major. I knew                                         I wanted to learn some sort of business, but at first I wasn't sure what field. I tried hard to think about what my limitations may mean on the job, so I decided on accounting... and that did not last long.  I absolutely couldn't look at a computer screen all day.  I was overwhelmed by a trait I had my entire life;  I love to talk!!  I quickly changed my major to business management.  I graduated from the school of business 6 years later.  Yes 6, remember my problem with being too chatty and therein overly social.  That was much more fun than actually applying myself.

My last year of college I had caught the eye of a young man working in town.  He had tried to ask me out a few times to no avail .  I just wasn't interested, until one evening I returned home and as I went unlock the door and I saw a note stuck in the door frame.  Honestly, it was not that he left a note or what was on the note itself.  What caught my attention was that the paper was stuffed in the door right at my eye level.  I thought a man that had that kind of forethought certainly deserved a chance with me.  He and I were married for the next 10 years.

After my divorce, I returned to my hometown .  I found a job.  I tried my best to keep my debts met.  And, I deeply worked on recalibrating myself.

I found myself lonely, ashamed and depressed.  I dealt with caregiver issues, money issues, and the issues of being much too overweight .  Oh and my disease, my "glitch", had continually gotten worse.  I tried to take it all on headfirst .

Three years later, I was working too much, never eating and sleeping very little.  This was also when online dating became hot, so I indulged in that little as well .

It seemed as though no matter how hard I tried I was coming up short on all angles.  I was completely unfulfilled, tired and starving. To this day, I cannot recall exactly what happened to put me over the edge.  I just vividly remember driving to work and not being able to see through my tears.  I was crying so hard I had to pull off the road.  I felt so heavy with burden and guilt.  I didn't feel like I could go on like that.  I didn't know what to do, so I prayed right there on the side of the road.  I prayed like I had never prayed before.  I spoke to Him as though He knew of all my burdens, my needs and my hope for blessings.  I asked God to help me.  I told Him I could not do it alone.  It was then that asked for His forgiveness and direction and love... 

And I got it all!!

Things became clearer and easier. 
My focus changed and I tried to be better all around.

I met a new man, a godly man.  He was like no one else                                                                I had known.  Everything was better with David in my life.                                                              And so our whirlwind romance ensued.  We met on Halloween and married the following March.

And here we are almost 15 years later, still each other's best friend, cheerleader, confidant and compass home.  And, we are still deeply in love with Christ and with each other.

Just a few years after I married David, I was nominated for a statewide pageant for the title Ms. Wheelchair Michigan.  For fun I gave it a try.   I presented a platform speech on self-advocacy.  It was awesome if I do say so.  Before I knew it, I was crowned!!  I traveled around Michigan and was interviewed for many articles and radio.  I was also so blessed to have been sponsored by my employer at the time. 

As part of my reign, I traveled to Maryland to compete for the national title of Ms. Wheelchair America.  This was such an incredible opportunity for me to be able to uphold my platform, which I believe in and try to live every day.  I met beautiful, intelligent and accomplished women from all over the U.S.  This was a week long contest including workshops, group exercises, fun evening events, again a platform speech and finally answering questions from the judges and leading into the crowning ceremony.  I landed Third Runner-up to Ms. Wheelchair America.  I would not have changed my experience there for the world.

Shortly after returning to reality, I was recognized by my alma mater for my achievements and what I openly believed in and spoke about.

                                          This was an incredible time in my life.  All throughout I had strong and                                                heartfelt support from my amazing husband and loving family. 

                                          It was just shortly after, however, I had a broken leg and a broken heart                                              at the same time.  I was accidentally dropped from my transfer lift. I had                                            terrible pain with a couple fractured ribs and a broken leg.  At the same time, there were circumstances that led me to resigning from a job I loved.  These unfortunate incidents broke my heart and my spirit.

As my disease had continually worsened, my absences from being susceptible to illness had become too lengthy and frequent.  It was becoming a real problem for employers and resulted in me being let go.  It was in 2012 that I made the decision to stop working and try to focus on my health.  This was so hard to swallow.  I loved working and socializing and using my brain.

I tried a couple different things with less stress or expectations, but they didn't work out.

Oh, I have failed to mention that other than my husband, of course,  I have had the absolute best, unbelievable blessing for someone with this significant level of impairment.   ...I can drive!!  Providing my ultimate independence, I drive with highly technical equipment allowing me to go when and where I want.  This is something I never thought would be possible in my lifetime. And, I cannot tell you exactly how much I love to drive!!

I am certainly not saying everything is perfect.  In fact, far from it.  I lost another sister to complications of our disease. I have lost three of my sisters, two of which were disabled.  Losing someone as close as a sister is gut wrenching agony.  People often say to someone grieving, "Things will get better over time".  That's utter BS. It doesn't get better, it just gets more internal.  For me, its compartmentalized and more quiet.  I guess.

I deal with some difficulty with medical coverage, constant caregiver issues,                            adjusting to living on disability, trying to accept the enormous loss of already limited body                        functions and now again struggling with being seriously overweight.

But here I am, with my own business!  This is crazy, but I saw the first Life Coach                                  on a television series.  I kid you not.  The character portrayed a business                            performance coach for stock traders.  I thought it would be so cool if I could                                        apply similar techniques to the different battles we tackle as people                                              "living disabled". 
 
With broad shoulders, a listening ear and a knack to chat, I will intend to provide certified life coaching for people with disabilities, their caregivers, family and friends.  Together we will conquer the many facets involved in living disabled. We will do so with dignity and "Grace".  Despite what may be just a "Glitch", we will help each other stand firm on many issues and standards held strong, to absolutely and first and foremost be who we are as people.

Let's make it happen!!

     ~ Kathy 

 

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