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There is nothing easy, fun, glamorous, lazy, attention seeking or playful about Syringomyelia. It’s truly exhausting both physically and emotionally. For some it’s gradual but for me it was sudden. It’s assumed that my Syrinx was caused by a trauma impact from falling down stairs. The impact was full force with all of my weight on the thoracic section of my spine.
I have to admit, with my Syringomyelia, there are times that I think to myself that it would be easier to jump into a powered chair. For me, and I know many others, gimping around simply isn’t easy nor fun.
However, knowing how my mind works, I’d have to ‘upgrade’ my power chair with the following requirements:
- Higher horse power (No top speed / Highway capable)
- Rollover cage equipped (Safety first)
- Rechargeable with solar and / or old beer (Don’t drink and drive)
- Mag wheels (with playing cards clipped on for that cool motorcycle sound)
- 4 wheel drive capable (In case a mudding opportunity arises)
- Racing stripes (Look fast and be fast)
- Hydraulics (Just because)
- Heated seats with enough room so my wife could ride bit….ting her lip
- Transformable into a robot or something completely not ‘politically correct’ (Why not)
- Hidden satellite TV with DVR (While waiting for stop lights)
- High wattage stereo system with Bluetooth (No texting while terrorizing)
- Built in cooler (For whatever)
- License plate with ‘And Stuff’ (Everything is better with ‘And Stuff’)
The bottom line is if I have to ride, I’m going to do it in style since “Gimp’n Ain’t Easy”.
I could race around with a sign that would say, ‘This power chair is far faster than the help we need to fight these diseases’. OK, actually the normal speed of a power chair is likely faster to be honest.
I definitely hate not being able to take off running after my daughter or wife without falling or hurting. Please note: They typically don’t try to run away because of the rope. Ha!
I continue to try to exercise, walk 5000 steps or more a day, stretch, etc. Alas, even with trying, the doctors tend to ‘think’ it’s not enough. This is why it’s so important to support organizations that are fighting for us with Syringomyelia or Arnold-Chiari Malformations. No body wants to resign themselves to a power chair or bed but it is happening with minimal REAL support from the medical community. On top of this, social support and employment support is as equal if not less. Some of those organizations are on my ‘Is There Support?‘ page.
Again, I don’t take Syringomyelia lightly but I do take it lightheartedly. It’s the way I cope because I will not let it beat me!
2 Corinthians 4:16 NIV “Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day.”
Please feel free to send me your thoughts or more resource links using my contact page. Peace, Love, Pancakes… — Michael Doc Davis (SyrinGoWhat.com), fellow Syringomyelian