Advent Meditations  

By Sallie Rhodes

I have Stiff Person Syndrome. Let me tell you about “diagnosis day”.

It was the day before my birthday and some family came to visit - to celebrate with cakes, bright colored cookies, gifts and most importantly, family. They were setting up in the family room as I was brushing my hair (back when I had long hair) and straightening my appearance before hopping in my wheelchair, eager to see my family. Before I could make it out of bed, the doctors rushed in saying, “Good news! We have a diagnosis!” I was floored. I couldn’t wait to be cured. So they both sit down and pause…never good…and tell me excitedly that I have several forms of Stiff Person Syndrome. Well, let me just tell you how BEAMING I was! Never smiled so much in my life! I had a diagnosis. That meant we had something to aim for, to fix me and get me out of there soon. So, on with the birthday celebration and fun. Daddy rolled me across the hall to hugs and kisses and happy birthdays all around. I finally said, “Mama, Mama, did you tell them? Did you tell them?!” And she nodded that yes, she had. I yelled that I have a diagnosis and was still beaming. I had a diagnosis and was surrounded by family. Everything was finally, after months of being stuck in the hospital, going my way.

Well, that evening my mom told me what having Stiff Person Syndrome really meant…no cure. The hope and joy I experienced all day was crushed by my mom’s words of truth. While it was disappointing to hear, I still felt hope. Hope that they would find a cure, a good treatment, something to help me control my problems. That hope never left. It never left because that hope was very clearly from God and has never left me. I’ve always said I WILL be cured of the incurable. I WILL run the half marathon I was training for before this condition wrecked havoc on my body - same t-shirt, different year. So hope has never left me, not during the down times when I’ve cried because the great life I had going for me was dumped upside down and ruined. Now to have that life put together with the HOPE of Christ in a new and different makeshift way. Now, while my hope in Him has never left, my family and I still believe that I will be cured. Two steps forward and one step back is still moving forward, therefore there’s no reason to lose hope. It’s ok to be frustrated and punch a pillow a few times (as long as you’re not on blood thinners—oops!) before you pick your head up and find another route to treat this awful condition. 

I’ve learned so much about myself and the strength God gave me, the true love of my family, and the hope in Our Lord Jesus Christ to be able to keep my head up and a smile on my face and fight (and stubbornness…which also may have come from Daddy, too!). To fight in my heart, to beat this condition and be back how I used to be. Without hope, I’d have nothing. I’d be nothing. I would die. If you think about life without hope, what would you be, look forward to, see in the future? HOPE is a gift we all have been given and I have found each morning that I carry it along with me, tucked in my heart to keep chugging along until that day comes when I am cured.

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