Skip to main content

A Little Help

2Spoke with my psychologist today; I think when one is staring down the barrel of a terminal illness, they should never go it alone. There is so much to face and get through; my disease, ALS, amyotrophic lateral  sclerosis, otherwise known as Lou Gehrig's Disease, is a progressive and fatal, paralyzing neurologic illness that, inexorably, robs us of our lives, as we know it.



As I have learned, terminal illness also affects everybody around us, sisters, brothers, mothers, fathers, children, grandchildren, extended family, friends, acquaintances, peers, employers, past all-of-the-aforementions, and you-name-ems, will all have feelings to process. And sometimes they process all over you, as if you don't have enough to deal with. Other times, you're processed right out of people's lives, as if you're contagious. Note: ALS is not contagious and I couldn't give it to you even if I wanted to.

 ALS has the added benefits of affecting the brain in many of us, heightening emotions and amping up the  impulsivity. My feel goods were very, very good but my feel bads found me winging down the road in my power wheelchair, flipping off an officer of the law. Not my normal means of conflict management, to say the least.

Surprisingly, only mild medicinal help was in order, a bit of Seroquil with a side of Effexor balanced the highs and lows, without altering my basic personality; I still laugh, cry, get angry, feel fearful and hopeful, fill up with love, get indecisive, etc. Thus, I still need occasional help with perspective.

I mentioned that I no longer served a purpose. I wasn't feeling morose or depressed, just a casual statement of fact tinged with faint regret. She reminded me that I do still have a purpose, actually several. I'm still a wife, mother, daughter, sister, aunt, cousin, friend, acquaintance, neighbor, Facebook friend, blogger, etc. I'm a wife to Rod, though I beat myself up for causing him lack of sleep, malnutrition, loss of lifestyle, loss of money and assets, and loss of security. I'm still a daughter to my mother and stepfather, father and stepmother, though I became highly critical of their lack in caring and support after my incapacitation. I'm still mother to Jennifer, who I feel I failed as a child.

Did you hear that?! She reminds me of the good stuff and I add qualifiers.

Comments

Popular posts from this blog

I Remember...

I remember catching fireflies,  putting them in a jar, as a girl of five. I picked pears off a tree that overhung an alleyway on my route home from school, then enjoyed the forbidden fruit. .I had a golden cat who chased a gray mouse through our living room sending my mother, 3-year old sister, and me screaming atop the sofa and chairs. We lived in a farmhouse and I watched Romper Room. A daddy longlegs skittered across my dirty kid legs as I teeter-tottered on a broken kitchen chair back. I played grocery store and laid out a bedroll for group nap time in preschool. We lived in an apartment attached to a bakery. My maternal grandparents visited and a photo was snapped. Grandma held Dawn and Grandpa held me. I held Grandpa's chin. Walking through the back of the flour-caked kitchen, I saw scrumptious pastries and colorful toys stuck in the cupcakes with my hungry kids eyes. We lived in a two-story apartment building next door to a large farmer's field.  That field was my...

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...

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...