Patience

I hope in a year from now I'll look back on Sept '15 through June '16 as "That time I stayed home.  A lot."

I drive with hand controls.  I took six hours of Driver's Ed and got a restricted driver's license.  My right leg is my bad leg (although my left leg isn't moving so well either these days), so driving with hand controls is a relief, not a challenge.  I don't ever accidentally try to use my foot because my foot won't move!

Now that my right arm and hand are very weak, I am working on getting "reduced effort steering" on my car.  I'm going through Vocational Rehabilitation, which is a government agency that helps people with disabilities stay working.  They paid for my hand controls.  They'll pay for reduced effort steering.  They'll pay to get a mini-van converted with a ramp.  They came to my office and assessed my work environment and concluded I could use a desk that will rise and lower (to fit my power chair), a different type of mouse, a smaller keyboard (to ease one-handed typing), and Dragon Naturally Speaking software, which will allow me to verbally command my computer and ease hand fatigue.  And Voc Rehab ordered and paid for all the items.  It is a wonderful resource, one that I'm so thankful for.  We have incredible expenses due to MS, so to get these things paid for is great!

BUT.  It takes soooooo long.  I started the hand control process in May 2013 and they were finally placed in my car on Dec. 24, 2013.

I started the office modification and reduced effort steering/mini-van process on Sept. 1, 2015.  And I'm still waiting!! The office supplies order has been placed, I was told today.  Until we get the mini-van with a ramp figured out, I can't go anywhere alone.  Luckily I have family and awesome friends who have learned how to help me get in the car and how to assemble my scooter. But I sure do miss running to the store on my own every now and then.  I miss going to the library and spending as long as I want looking for the perfect books, no one waiting on me.    Walking from my house to my car, maybe 20 steps, is so physically draining that most times I prefer to stay home!

A year from now... by then I hope to be able to zoom my chair right into the van, drive, and do what I want!  I'm wrapping my brain around the idea of being out and about in my hulk of a power chair.  I hated using a cane, but got used to it.  Dreaded taking my scooter out in public, but now have even been on the (insane) sidewalks of NYC with it.  So I'll be in a power chair.  Ok, not the image of myself I dream of portraying.  But I can't stay home the rest of my life! It's still me.  Just in a big chair that drives.  At least it's pink.