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.