Letter to OK state legislators

I  realize that my complaint comes after the fact, and maybe too late.  However, I want you to know that decisions by Oklahoma legislators are shameful, hurtful,  and an embarrassment to the state.  Recent state medicaid cuts hurt people that are already the most vulnerable. and certainly do not represent me or my Oklahoma values.

I am living proof that cuts to medicaid are devastating. And how would she know, you might ask.  I live it.  Please let me tell you of my experience.

I have FA (Friedreich’s Ataxia).  Not many people have even heard of it because it’s considered a rare disease.  Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have Friedreich’s ataxia.  Currently, there is no cure or treatment.  My symptoms are loss of balance and coordination (started using a mobility scooter in my early 20’s, 1991 ), scoliosis (I had corrective spinal surgery at age 16, 1986), foot problems (feet turning inward & I wear ankle support braces, both around 2006), dysarthria (first noticed it in 2001 during my last year of teaching, then speech has gradually worsened), and severe daily fatigue.  (Cognition is not affected.)  FA is very similar to Muscular Dystrophy and ALS.)  As you can see, the problems are on-going and progressive.

I live with my primary caregivers, my aging parents, and I qualify for in-home, self-directed state medicaid waiver programs.  This state is already experiencing cuts, as you know. I don’t approve of programs for the elderly and  disabled being cut or dissolved, never have been.  Are you willing to fix 2 meals a day for me, use a lift six times a day for toileting, light housekeeping. help bathe, dress, and drive me to appointments?  I didn’t think so. A personal service aide visits daily to assist with these tasks. The program actually saves the state of OK money in terms of keeping me in my home.  $80,000 a year for me to live in a nursing home vs. $30,000 for a caregiver to come to my house.  So, medicaid provides jobs to health care workers, case managers, and various office personnel.  Medicaid provides a level of dignity to clients, and puts supplemental income back into the economy.  (Personal experience.)

As people do, I just went on… high school graduation, college, marriage, career as a Special Ed. Teacher, and NSU grad. College was the first time I used a wheelchair – actually a mobility scooter.

Currently, I spend almost forty hours a week with an in home personal care assistant (thank you taxpayer, you make that possible), and two days a week, I go to the gym/physical therapy. I follow healthy eating habits, and a vitamin/supplement regime.  I am blessed with many opportunities, mercies, and kindnesses. I am very cognizant that circumstances could be worse. With this in mind, I try to suck it up and go on, and bloom where I’m planted.

FA , in my opinion, is quite a cruel disease.  It is relentless, demanding, and overwhelming.  That being said, I tend to be a positive person, and strive to achieve.  I choose living, and learning, and challenging myself.  Years ago, I knew on an academic level, the progression patterns of FA. Using adaptive equipment is no problem. I didn’t particularly like the diagnosis, but it did not stop me; until now.  I’ve lived thirty plus years as being diagnosed with Friedreich’s Ataxia.  Does it stop me from doing all that I want to do?  Heavens, yes.  I have settled into the part of disease progression of being physically dependent.  Freedoms I once took for granted, like driving, living on my schedule, cooking, cleaning, gardening, maintaining a house, or, taking care of a pet are fond memories.  Many dreams have died, as I have been confronted by the reality of FA.  Have I given up?  Not a chance.  Granted, I have limits, but within those parameters, I am an active, healthy, busy, happy person.  I enjoy singing in the church choir, reading, attending music concerts, working out at the gym, and spending time with friends and family.

This is my story, and my experience with medicaid.  Living in the disabled world is a different reality.   Time is way more fluid, generally, most folks are patient and helpful, although, in this part of the world there is a segment of the population who feel duty bound to lay hands on me, and pray.  (Complete strangers!)  I live day-to-day, and I’m worried about my future anyway, but seeing my 75 year old parents physically struggle to take care of me is awful.  My other option is a nursing home or move out of state, which takes money I don’t have.  Will the state pay for me to relocate?

Quit cutting taxes for the rich and/or reinstate said tax break, donate part or all your salary to senior nutrition plans, raise the gasoline tax by less than a penny per gallon.  Think man!  The OK legislature is not representing me, and I am a voter (who has been betrayed).  I don’t run my household expenses so myopically, and I do my best to live in a considerate, respectful manner; not hurting people out of willful ignorance.  I expect the same from my political representatives.

New International Version (NIV

40 “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

Christin Haun; OK District 98

 

 

 

 

Silent Lucidity vs. FA-Fog-of-Fatigue

In the late 1980’s, into the early 1990’s, I was a “hairband” listener. In 1990, a band  named Queensryche garnered my attention with a song called, Silent Lucidity. The song is about a lucid dream, but at the time, I wasn’t considering lyric meaning.   I just thought saying or singing the word lucidity was, well, fun.   I’ve always  enjoyed the English lexicon.  (Yes, I’m a word nerd.)   I knew what the word meant. Lucidity was only in my reading vocabulary, but not my speaking vocabulary.  Lucidity means clarity; silent lucidity = quiet clarity… made sense to me.  Fast forward to the present, and while the song, Silent Lucidity, is no longer in my current listening repertoire, the term applies… the quiet clarity, anyway.

FA does not affect cognition, but it does affect muscles, and, as the disease has progressed, it is increasingly more difficult to speak.  Not because I am incapable of thought, but one of my energy-saving, coping techniques is not to speak unless I really have something to say.  Even surrounded by people, I’m quiet.  Observing.  Listening.  Mind engaged.  Quiet clarity.  Silent lucidity… except for the sneaky. lurking FA-fog-of-fatigue.

The FA-fog- of-fatigue is a thing, in my world.  Fatigue is a real, and problematic symptom of Friedreich’s Ataxia. I only have so much physical energy  before I need to recharge.  I nap nearly every day, at this point. I’m reverting to the schedule of a toddler Mind you, the fatigue has zero to do with mental energy.  I can’t ignore or escape from the fatigue anymore, and it’s easy to spot for those who are frequently around me,   When I’m tired my movements and enunciation are sloppy  (sloppier)  and way more difficult.  I feel like a vice is on my tongue.  Transfers are less coordinated.  I have what I call, “lead butt”, and my knees buckle.  It’s becoming hard to manage.  My coping technique, besides rest, is to minimize conversation and activities, which can be a grievous predicament for a naturally gregarious person.   I’m angered by my  body constantly betraying me

The silver lining is that I listen more… and back to the song, Silent Lucidity, which I missed the intended meaning when it first hit the airwaves.  I looked up facts about the song, and here’s what I learned:  “Written by Queensrÿche guitarist Chris DeGarmo (who left the band in 1998), this is a song that deals with a person having a lucid dream. A lucid dream happens when you are aware that you are dreaming, and can control parts of it. … People can experience incredible physical sensations during dreaming.”

Hmmm…  both the song, Silent Lucidity, and the FA-fog-of-fatigue are mysterious, alternate realities.  Perhaps my reality is only a lucid dream in which I can control only a part.  (Sounds like FA to me.)  Wow, if that’s the case, I seriously need a new dream!

JESUS, TAKE THE WHEELchair

After 15ish year it happened  again… the “can I pray for you because you’re in a wheelchair?” query made by a complete stranger.  I  was accosted at a local grocery store while selecting cardamom for purchase.  I had no idea that  a mid-day stroll, or shall I say, roll, down the spice aisle would irritate the fire out of me!

I was vaguely aware that another shopper had arrived just at my elbow, but I did not lose my gaze on the intended merchandise, even when I heard a Cindy Lou Who-esque gasp.  I felt a tap-tap-tap on my shoulder, and looked up, just as the young woman said warmly, “Excuse me… I see you’re in a wheelchair”.  I didn’t utter the phrase, “How perceptive you are!”;  I merely thought it, as a wry grin gave way to a matter-of-fact, “Yes”.  I steadily watched her stammer out her next question, wondering if she might pray for me.

I am no stranger to these acts.  I live in a town that is home to a charismatic bible church and college, yet, it’s been awhile since a well-meaning but uninformed stranger has singled me out for a public healing. The first time it happened, I felt just horrible that someone I did not know, that new nothing about me, thought I obviously needed  to be repaired of my unhappy, unChristian, heathenous ways.  I ended up in tears.  My last encounter was ugly, and my mouth went into high gear.  I wasn’t too proud of myself, and I  didn’t want to repeat it.  I’ve matured some, grown in the Word, and the progression of FA has made speaking more difficult. (To conserve energy, I speak minimally).  Keeping all those things in mind, my reply to her was short.  “If that’s what YOU need to do, then okay.”  She took my hand, and prayed to “God, the Father”. (I was on board with that.)  She asked God to heal my body and brain.  (Starting to feel offended by reference to brain, then I considered that  FA affects the cerebellum, so feeling insulted subsides).  She asked for healing.  (Right on, sister… but good luck with that.  Many people, including yours truly,  have prayed for that very thing for 30 years.)   Her prayer was fine.  I’m not scared of prayer.  Prayer is communication with God.  I think going up to a complete stranger in a store is rude and really quite arrogant.  Whatever the true intent of her prayer, I had listened, and thanked her, and could go about my shopping, right??  No, the discomfort grew.

Feeling some mild annoyance that my shopping time had been interrupted, I was relieved that this encounter was  nearing an end.  My personal caregiving assistant was with me, and we have a limited time-frame to get things done. The young woman then proceeded to question me as to the effectiveness of her prayer.  “Can you do something now, that you couldn’t do before?”, she chirped.  “Like… what?”, I asked.  I just sat there wondering if I had just entered the Twilight Zone, or if John Quinones was going to appear, saying that this was a fabricated incident filmed for the tv show, “What Would You Do?”.  After an excruciatingly long 20 seconds of silence, I began to wonder if I should try to stand.  I didn’t feel any different.  “No.”, I shook my head, “no change”.  “Oh, okay”, her demeanor gave way to disappointment.  I watched her wish me a good day, and walk away, still trying to wrap my brain around the events.  I focused on my intended task,and processed the  encounter later that day.

I wonder who convinced her that her actions would be welcomed.  They weren’t.  I thought she was presumptive, and I’m wary of public displays of prayer that single people out as less than.  It seemed like her prayer was more to glorify herself, than extend kindness to me, or glorify God, but the thing that offended me most was her expectation that because SHE prayed, a miraculous healing would be instantaneous.  It occurred to me that perhaps we don’t pray to the same God, or our understanding of God is different.  I don’t believe that God is the great genie in the sky.  I know some people may disagree, but, in my opinion, there are some things prayer can’t solve.  FA is one of those things.  I occasionally pray for healing.  Mostly, I pray for strength and wisdom.  I pray for love, peace, kindness, goodness, faithfulness, and self-control; because, whether I use a wheelchair, or not that’s the sort of person that I want to be.