My new custom built chair came in yesterday.
A TiLite Aero Z series I, thicker cushion with more back support. Better suited for someone with limited muscular function in their legs.
Better suited for someone like me, who is unable to feel anything from the waist down.
Paraplegic (spastic). I am considered paraplegic due to the lack of muscle function from this form of dysautonomia that I have and the overlapping mitochondrial myopathy.
This is the first time I have typed this out on a public forum.
So here's a rundown of what I handle daily: no control of bladder or bowel, no sensation from thenwaist down, inability to eat due to the severity of my GI paralysis, chronic pain, a G tube, lack of functioning immune system, maintaining a very clean environment because of said immune compromise, keeping track of thbe feedings and hudration needs, organizing doctor's appointments...
...and receiving loving support by people who care about me. Of making purposful strides forward because I feel that I can help other people. Of laughing every day. Pouring my love for others into the hands of God -- ever an eager and listening ear.
I am not miserable. Occasionally I get frustrated and angry and need to sit and cry and be still under my weighted blanket.
Thriving anyway isn't about being strong. It's about how far you are willing to reach. How much do you believe that a life that looks complicated and difficult a painful can still be so lovely? What are you willing to give of yourself?
This is the reason I write. Not just because I love the flowing melody of language, but because I am willing to give to you my whole road that I trek, the ups and downs, the quick turns, trips, the trolleys that somehow come to pick me up just in time.
I want to share these things with you so you may find hope. I let you look through the window of my world so maybe ONE person can somehow be helped my what I have to say.
Calling myself chronically ill, a wheeler, a tubie, a nutcase is for your amusment and for your own walking staff so you too may find your own strength from wherever you may find.
I consider myself blessed. I could surround the world with all the miraculous things I have been given and more. My life isn't about the labels or numbers. It is about my goals and passions and dreams...whether attainable or not doesn't matter at all...as long as they are simply there.
And I also have you.
I really do, honestly, have a wonderful life.