Skip to main content

Gratitude to Walkers

Today is the day of the ALS Walk. I should specify the city, Seattle.

I have a team, TEAM TINA, formed by my husband, at the last minute. I must admit that I was not interested in the details of the walk. I doubted that I'd survive to attend and thus, nonstarter. Not a good attitude, I know. I did not attend. I'm just too fatigued all of the time. Just holding up my head is an effort.

I was surprised and heartened to find we raised $500! It is so important to raise money for research to cure ALS. This is a horrible disease!!!

Thank you to my walkers and donors!

***I stand corrected.  Team TINA had 12 walkers and raised $650!!  Wow.  I am humbled.

Comments

Popular posts from this blog

Lashing Out

Fed up. Sick of hearing, "I'm sorry."  Apologies don't erase the pain you inflict on me. You pull my pubic hair. Your nitrile gloves pull the hair from my head. Not once in a while but day in and day out. You turn me in a manner that suits you rather than in a manner that doesn't stress my body. Why won't you use the pad and sheet to turn me as one unit? Instead, you allow my body to twist as you hold me one-handed. How good you are at your job. What part of "my muscles are dying" don't you understand?

Shards Cling To

I just met my new psychologist and I already like her. I would say that it is effortless to talk to her, but talking to anyone through an augmentative and alternative communication (AAC) device takes a great deal of effort. One must think about what to say and drill it down concisely and succinctly, Then attempt to type it out with your eyes on a wonderous, but infuriating machine, and hope you nail the 'Speak' button, and not the 'Cancel' button. You're praying that the device doesn't spontaneously, disengage the eye gaze, leaving you mute and helpless. You're also praying that the calibration holds and your eyes don't tire or dry out. Aside from all of that, she did not overwhelm me with rapid fire questions, nor invade my personal space, by insisting on reading while I'm writing, instead of allowing me to "speak". Those things are huge. Counseling somebody with my disabilities, present unique challenges. I have major physical deficit...

Managed

Managed care, do not get me started. It is the bane of my existence and my savior. If quadriplegia has curtailed my activities, and it has, then being in a home has curtailed even more. I've had to dumb it down and set my standards low. Gone, are the halcyon days of getting in my wheelchair to go for a stroll or sit in the sun, or even sit in the sun room. Neither the nurses, nor patient care technicians, know how to put me in my wheelchair. Seriously. My chair has head controls and it is a bafflement. Most caregivers don't even realize I have head controls. First, they hit the left head pad when they lift the armrest which turns the chair on. Next, they sling me over and place me in the chair. The problem? My head, naturally, rests on the headrest, which accelerates and drives the chair and is beyond my control. Running over a caregiver or running myself into an obstruction are very real consequences of their ignorance. What could be worse? The caregivers remain clueless abo...