Wednesday, November 16, 2011

My Story

Update 12/7/2011 since I wrote the entry below I have lost my remaining ability to walk. Now I can stand and assist with transfers between my wheelchair and my lift chair or between my wheelchair and the shower chair or commode only.

It felt like things might just be coming together. After a childhood marred by alcoholism and abuse, two failed marriages and struggling to be a single mom to my three children with special needs, things were looking up. I had my dream job as a flight paramedic and was finishing my nursing degree. Finances were finally becoming something that wasn’t a constant source of stress. We lived in a nice neighborhood in a house that was big enough to meet out needs. My children were happy. I was happy.

And then, like the image in a fun-house mirror, my world began to distort. I started slurring my speech. OK, I was just tired. Really tired. Working 24-hour shifts on the helicopter and 12-hour shifts in the Emergency Department would make anyone tired. Add to that the stress of IEPs, therapies, specialists, equipment...well, you get the idea. Maybe no one noticed the slurring.

But someone did notice. To oblige them, I went to my family doctor who ordered an MRI to rule out “the really bad stuff”. GREAT NEWS! My MRI was clean. But my speech was worse. The neurologist ordered a slew of other tests. Everything came back normal. GREAT NEWS! Except everything wasn’t “normal”. The doctor still thought it looked like I had a type of Myasthenia Gravis, in spite of test results to the contrary. Regardless, something was wrong. I searched my symptoms on the internet. What I found wasn’t good. It was very NOT good. “Nah. I’m just tired.”

Time to get a second opinion.

The hammer dropped in a small exam room at Indiana University Hospital. The second neurologist reviewed all the previous testing, did his exam and then said words I’ll never forget: “I don’t think you have Myasthenia Gravis. I think you have Motor Neuron Disease. Amyotrophic Lateral Sclerosis. ALS. Have you heard of it? Sometimes it’s called Lou Gehrig’s Disease.” Yes, I had heard of it. I read the book “Tuesdays With Morrie” through tear-filled eyes years ago. I knew what ALS meant. Death. Death, preceded by progressive loss of all voluntary muscle function -- but with my mind and sensation fully intact. “The average life expectancy for someone with ALS is 3 to 5 years after diagnosis.” I don’t remember what else that doctor said.

Turns out that I didn’t die in “3 to 5 years”... I was diagnosed 6 years ago. My progression is slow, and since my diagnosis I’ve found that while indeed many people with ALS (pALS) die within a short period of time after diagnosis, a decent percentage live well past 5 years and a select few live a decade or more.

My life now looks nothing like it did when I was diagnosed. I managed to keep flying for 14 months after my diagnosis, only quitting then because my speech was becoming slurred enough that I was afraid it would endanger my patients. I worked in the ER and taught American Heart Association classes for a few months more, but ultimately the career I loved became incompatible with my disease.

I could tell you that I quit and never looked back...but I’d be lying. You see, I didn’t just have a career in emergency medical services. It was a fundamental part of my identity. I can’t remember a time before I wanted to do something “medical”. Now, that was gone.

It’s been 6 years since my diagnosis and I’ve been medically retired for 5. The first year after my “retirement” (at age 44) I was still healthy enough to do things like visit the Smoky Mountains with my son, but like everyone with ALS, my progression has been in a direction away from “normal” functioning.

A typical day for me now consists of awakening and having a caregiver turn off my breathing-machine and the luxury of a cup of coffee in bed. I check email, Facebook and maybe the news while my (and my son’s) caregiver readies things for my shower. I’m one of the blessed with ALS. I can still take a shower (albeit, laboriously). Many people with ALS don’t have the logistical support to get regular showers (either they don’t have the home modifications and/or don’t have the equipment and/or don’t have a caregiver willing or able to shower them). I’m still able to walk, using a walker, the few steps from my bed to my recliner. That’s where I spend most of my day, my face illuminated by the glow of the computer monitor. My computer is my window to the world.

I go on virtual, vicarious vacations courtesy of my friends’ postings on Facebook. I see the weather out the window. I shop on the internet, play games, do digital scrapbooking, write the occasional blog entry -- but none of that feels remotely like my life before ALS. Now, instead of hearing the radio blare a dispatch for a scene flight, I gaze at a scene on my desktop. Instead of donning a helmet, I don headgear for my non-invasive ventilator. Instead of learning the most up-to-the-minute medical technology, I learn the latest trick for scrapping on Photoshop Elements. Gone are the adrenaline-rushes. Now “rush” is not a word in my vocabulary (the faster I try to go the more my muscles rebel).

So, my new motto is the saying by Joseph Campbell, “We must let go of the life we have planned, so as to accept the one that is waiting for us.” There’s one thing wrong with that phrase -- it makes it sound like you do it once and it’s DONE. Truly, “letting go” of the life I had planned is a daily journey that must be begun again every day. Lamentations 3:22-23 says, “The steadfast love of the Lord never ceases; his mercies never come to an end; They are new every morning; great is your faithfulness.” It is probably not coincidence that the title of the book of the Bible where that verse is found means is “the passionate expression of grief or sorrow”. Every day I grieve the loss of my former-life and look to the “new normal” that God has for me.

God did not will that I have ALS. But He will not let my suffering be wasted. Nor will he waste yours. There’s nothing wrong with asking for suffering to be taken from us. Christ did it on the cross when he said, “Father, if you are willing, take this cup from me.”

I read a phrase on a friend’s Facebook status recently that said: God answer prayers in three ways: “God says yes and gives what you want..God says no and gives you something better…God says wait and give you the best.” She lost her husband to ALS this year but she knows that God is greater than ALS. Sometimes our prayers for an end to our suffering are answered with a “no” or a “wait”. The ultimate healing is the one we’ll receive when we see Jesus. In the mean time, we live.

The 11-year-old daughter of a friend of mine was just diagnosed with metastatic brain cancer. This child faces a regimen of therapies that may leave her only slightly better off than if she succumbed to the disease she is fighting. If she lives, she may be left blind, deaf or with brain damage. The torment her parents are facing is beyond my comprehension. How humbled I was to read her mother’s words, written while her precious child still lay in the children’s hospital, recovering from brain surgery: “I may receive odds or diagnoses I don't like but the mission remains the same, to bless, love and reflect Christ. I can walk in the moment and hold fast to my mission.”

Ultimately, holding fast to our mission is our goal. As followers of Jesus Christ we are called to love and serve Him…whether we are in sickness or in health, in riches or in poverty. Every morning, as a new day dawns, I thank God for my life and ask Him to show me how to magnify Him through it. His grace is manifest in my weakness and His mercies are new every morning.

Wednesday, September 14, 2011

Heart Wanted....

In Acts, David is referred to as a "man after God's own heart". David was a king, a poet, a murderer, a warrior and a child-victor over Golliath. David was far from perfect. But more than anything, David was after God's heart. He didn't want God's power or His favor for his own gain. David wanted God's heart. In Psalm 139:23 David writes "Search me, O God, and know my heart." It is no coincidence that those words were followed by a plea for God to reveal to him any "wicked way[s]" and for God to lead him "in the way everlasting."

I started a Bible Study this morning about David. At the conclusion of the lesson, we were given a sheet of paper, blank save for a giant heart drawn on it. The assignment: examine your heart right now and depict it in some way (words, drawings, colors). There were many heavy hearts at our table. A mother who's son has turned his back on God and his family, a woman who's husband died abruptly from cancer this summer, another friend who is separated from her spouse, and Amy and I, dealing with the weight of autism, Fragile X and ALS.

I glanced around the room while the women were working on their "hearts" and I saw many tears. Sometimes it is easy, when your heart is heavy, to think that yours is the only one. That "everyone else" has a rosy life. Some of us even pretend that it is rosy when, in fact, it isn't. Sound familiar?

Some days I feel as if my heart is a pulverized, unrecognizable mess. Yuck. Got a visual? I do. The thing God told me today is that he still wants it...desires passionate about it...all of it. So, today I pictured myself holding a tattered piece of blood-dripping meat, nearly unrecognizable as the organ it was created to be, out to my Father God, who lovingly cradled it in his outstretched hands and smiled as a child would when they are reunited with a loving parent: unmitigated joy.

Father, help me to remember that while, like David, I'm far from perfect, that what you want is all of my heart. Help me to remember that, like Abraham, who believed and it was "credited to him as righteousness," you look not on my brokenness or my sin but on the righteousness of Your Son who died to gain that righteousness for me. Thank you, Father, for that most wonderful gift! Lord, search my heart and renew a right spirit within me. Lead me in the way everlasting. Amen.


Saturday, August 13, 2011

It's Reality TV...for dogs

Stitch loves looking out my window. Earlier this summer, he REALLY liked it. It's like reality TV...for dogs:

Friday, August 5, 2011

Feast or Famine

This winter I pretty much did nothing since cold turns me into the tin man without an oil can. This summer I've had so many wonderful visitors that I haven't had time to blog. The summer rush is over and so I want to share some of what we did this summer.

Stitch got a bath. A great excuse to play with the hose! More of our summer activities to follow. Stay tuned.

Thursday, June 16, 2011

What A Wonderful World

This month's Good Housekeeping has a poignant article about a family affected by Fragile X Syndrome. For the first time since my kids were diagnosed (the first in 1989 before the gene was even discovered), I found an article that accurately captures the life we live. I've told people for years how blessed I am by my children, and it's obvious to see that it is sometimes a challenge. What people don't always see is the connection between the two extremes.

Take a few minutes to read the Good Houskeeping article. Then let me know what you think.

"Then I think to myself, 'What a wonderful world...'"

Tuesday, March 29, 2011

You're kidding, right?

A while back I made an appointment to get resting hand splints.  Common in ALS paraphernalia, they are just what they sound like...splints for your hands while you rest (in this case, sleep).  The intention of the splints is to keep your hands from becoming contractured, like this:
I knew I might be in trouble when, at the "fitting" appointment, the clinician brought in a splint similar to this:
See the problem with that????

After returning home and finding what I needed online, I emailed the tech to have him order some resting hand splints, which he did.  Today I went in to have them "fitted" and they were obviously too large.  After watching him fumble with the velcro (including trying to attach the "fuzzy" side of a strap attachment to a non-velcro part of the splint) and try to convince me that they weren't really too large (they extended  well over an inch beyond my longest finger and were a good 1/2 inch wider than the widest part of my palm), I finally politely asked that he order the next-smaller size.  Now, this is a certified orthotist, professional, presumably college-educated person... but when he went to put the splints back in their respective (right, left) boxes he held up the splints, looking at them, turning them around and upside down, trying to tell which was which.
Not a huge confidence builder.  Hopefully, I'll get the smaller size and be all set next visit.  Amy and I got a good laugh out of the whole thing!  Just another day-in-the-life.........

I need a particular piece of equipment to adapt my surroundings.  I know what I need.  I asked a "patient services/equipment" specialist at a national organization about where/how to get it (loan closet).  They referred me to a therapist who deals in that sort of equipment.  NEITHER of them had any clue what to tell me to do/what I needed specifically.  I went online and found PART NUMBERS and photographs for what I needed.  Took me 20 minutes...tops.  Moral of the story:  you're on your own.  I'll be pleasantly surprised if the loan closet has what I need.

I wonder why I don't participate in the national organization's fundraising activities??? Hummm.

Thursday, January 6, 2011

Tithing: Test Me In This -- A Book Review

Tithing: Test Me In This by Douglas Leblanc is part of the “Ancient Practices Series” of books. Other books in the series include – Sabbath, Fasting, Pilgrimage, Prayer, The Sacred Meal, and the Liturgical year.

Malachi 3:10 has been the subject of much debate throughout history and among many religious traditions. In the introduction to Tithing, Phyllis Tickle, General Editor of the “Ancient Practices Series”, writes that rather than a theological or historical treatise on tithing, Doug Leblanc has “…chosen to discover men and women who…tithe and are willing to say…why they do so.”

As I started this book, I looked forward to inspiring stories of how God has used tithing to bring people closer to Himself. What I found mostly was, in fact, largely biographical information on the persons featured in the book, with varying degrees of reference to tithing and it’s impact in their spiritual lives. While some of the stories were inspiring, some were hardly recognizable as being on the topic at all. A large proportion of the book is the account of Christians from the “social justice” perspective, some bordering on liberation theology. As a conservative Christian, I was pleased to see a chapter on Randy Alcorn and his views, although even that chapter felt like it was more about sacrificing for a principle (pro-life) than tithing.

Overall, I was disappointed in the book. Tithing is a joyous gift from God allowing us to participate in showing His love to a hurting world. I had hoped that Tithing would be more of an encouragement to non-tithers, enticing them to “…test [God] in this…” (Malachi 3:10). Instead the book felt like a series of biographical stories of community organizers and how their ministries were changed by an attitude of giving. I can’t help but feel that the average person would be more inspired by stories of individuals or families and the impact that tithing had on their lives.

Disclosure of Material Connection: I received this book free from the publisher through the book review bloggers program. I was not required to write a positive review. The opinions I have expressed are my own. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255 : “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”