- Posted January 25, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
Disabled But Still Me
I pulled my gold Grand Marquis into a parking space and put it in park. After turning it off, I turned to get out. But when I stood, a familiar pain shot through the back side of my right ankle. It was the third time in a week the pain had stopped me in my tracks. But this time, it didn’t let up. My sister brought me crutches and I hobbled a few days before heading to physical therapy—again.
After months of therapy, my neurologist agreed hand controls might alleviate some of the discomfort I battled while driving. After years of walking difficulties and right leg weakness, I had the ticket to change. Intimidated by the process, but weary of pain, I finally dialed the number.
Another physical therapist called the next day and encouraged me to call the state vocational rehabilitation office instead. The program exists to help disabled people remain employed, providing funds for assistant devices and training. With little income, the thought of financial assistance spurred me on. But one word didn’t seem to fit—disabled.
I have a degree from Vanderbilt University; graduated as the salutatorian of the Blair School of Music. After losing my artist husband at the age of 27 to a brain tumor, I held to my dreams and goals, hoping to juggle a career with my role as a single parent. But being a mom won out—or rather, being a mom with undiagnosed mitochondrial disease simply took its toll.
By the time a muscle biopsy and spinal tap brought clarity to tiresome symptoms almost twenty years later, I hadn’t walked normally for six years. New medicine helped for a time, raising the folic acid levels in my spinal fluid. But about a month before I called Voc Rehab, I crashed. A semester of private student instruction had come to an end and my body had worn down. I struggled to drive and climb stairs, let alone get through each day.
So even I can’t explain why my throat tightened and tears stung my eyes when the intake counselor asked, “Are you disabled?” During a fall two years before, a ligament tore from my ankle. Herniated disk surgery followed ligament surgery by five weeks. Weak muscles impeded normal healing. Painful nerves daily reminded me of the permanent damage in my right leg. And yet I held onto the image of myself as “normal.”
Wiping tears, I replied, “I guess so.” And then handed over the muscle biopsy report that confirms the mitochondria—or powerhouses in my cells—don’t do their job well.
I lay my head on the conference table while I waited for the counselor to make a copy of the report. A war raged inside. The voice of fear said if I accepted the changes on the outside I’d lose who I was on the inside.
But that voice was wrong. And in time, the staff at Voc Rehab helped me understand.
Within two weeks, I was assigned a counselor named Cynthia. We met for an hour. She asked good questions and learned about my disease all while treating me with dignity and warmth. At the time I wondered if I should consider employment options other than private student instruction, so she ordered a work assessment and started the process to consider hand controls for my car.
Two weeks later I met an evaluator at the county library for a day of testing. Since my brain tired easily and I didn’t know what to expect, I picked at my nails while we waited for a second student to arrive. But when we conferred after the testing, I realized I still had the ability to do more with my life. My math skills weren't what they used to be and my stamina was limited, but after weeks of recovering on my living room floor it was refreshing to take stock of my skills and see potential.
My day in the library reestablished some confidence. And I was thankful.
When the leaves began to change color, I heard from Rafael, an engineer who looks at each need from a mechanical standpoint. We scheduled a visit and sat at my kitchen table for over an hour while he asked questions and listened as I described my limitations—one more time. At one point he asked if I had considered getting a scooter. Tears didn’t just sting my eyes, they rolled down my cheeks. I apologized for the emotion but was getting used it. Every time a new device was mentioned for me to consider, fear and anxiety welled up. They said, “The more contraptions you use, the more disabled you will be.”
We discussed other changes, like help with the stairs in my house. But I wasn’t ready to think beyond hand controls for my car. After I’d been sitting at the table for over an hour, however, severe nerve pain shot from my hip to my foot when I stood. I struggled to get things together for my next appointment. Thirty minutes earlier I’d balked at the notion I needed more assistant devices, yet could only limp to my car.
Rafael set the next step in motion and a month later I met Beth. Beth is an occupational therapist who asked more questions, tested my physical strength, and then took me driving in a van—with hand controls. I told her she's my hero because she gets in cars with people every day who've never touched hand controls and lets them drive. She sees beyond their handicaps and fights for potential.
I needed her vision that day.
We started with right-hand controls. Since my right side is weaker, I soon realized they wouldn’t work. Discouraged, I almost gave up. But Beth knew better and changed to left-hand controls. Due to full body weakness, they didn't solve the problem completely—but they helped. Since I've coordinated hands and feet playing piano for 35 years, we decided to leave the foot pedals uncovered when the hand controls were installed so I could share the load between my arms and my legs.
Before I left, Beth told me she understood my struggle. She’d watched many MS patients fight using a device that makes buttoning a shirt easier. To the patient, the device denotes defeat. Beth offered, “If it makes life easier and you can get to what you want to do faster, why allow yourself to get bogged down by how the shirt is buttoned? The equipment is here to help you live life beyond the daily tasks that get so hard.”
I couldn’t argue with her. It made sense. Hand controls. Walkers. Scooters. Chair lifts. They exist to ease mobility stress so I can enjoy life with fewer limits.
Cynthia and I met again a few weeks later to finalize plans. During our meeting I mentioned I’d recently submitted a story for consideration in a book but had to be careful about how much I typed each day. She decided to add an evaluation for Dragon Software into my plan. I met Bill at the store my husband and I own a few weeks before Christmas where he introduced me to computer voice technology. Another world opened, expanding boundaries that once limited productivity.
I’m still learning to use all my new tools; to integrate the new devices into my life. But I’m driving a mini-van with hand controls and writing this story with voice activation software. Minor mental skirmishes remind me of the war that once raged. But as I’ve accepted help and come to terms with the new outside me, the Susan that once was, and who had somewhat lost her way, is living again.
The day I drove my mini-van off the CarMax lot, I got an email from Bill. Someone from the Voc Rehab Department had chosen me to receive a year end award. My husband and I drove across town a few days later to attend their annual meeting and ceremony. I’d be lying if I didn’t say I’d rather have a Grammy sitting on my shelf. But when I stood with the team that had lifted from the depths of mud and mire, I couldn’t have been more grateful.
They taught me I’m disabled—but very much still me.