Have you ever heard of Arnold-Chiari Malformation? I never had either until my good friend Liz was diagnosed with it several years ago.
Liz was bedridden in the early 90’s with severe flu-like symptoms. Doctors were mystified and one contradicted the next. First diagnosed with fibromyalgia, then chronic fatigue syndrome, Liz had debilitating episodes, not knowing when it would affect her again.
Never did I imagine the decade-long ordeal this condition would put Liz through, or the inspiring lessons she’s taught so many of us through it.
Liz already had a pretty full life, with a high school aged son, a middle schooler with Down Syndrome and accompanying health issues, and a newly adopted pre-school aged daughter, when Chiari Syndrome was finally diagnosed by her neurosurgeon. Extensive testing showed that her brain was distentending into her spinal canal.
In simple terms, her skull was too small for her brain, causing her brain to protrude through the spinal canal. Because the cerebellum and brainstem are involved, breathing, swallowing, heart rate and even balance are greatly affected.
Vertigo severe enough to force her to pull over when driving, along with intense neck spasms where she was unable to turn her head an inch, were a constant struggle. Liz would have periods where she’d have to lay down and wait for the vertigo and pain to pass. Dizziness and numbness in her arms and shoulders affected her daily life. Her blood pressure would drop and she’d feel like she was going to pass out. Sleep apnea as well as ringing in the ears must have been horrible, but Liz took it all in stride. Her brain stem was dropping and because of that her brain was actually sinking into her spine. Needless to say, all of this put a great deal of stress on her, as well as on her devoted husband, Scott, who during this ordeal has been burdened by unemployment more than once.
Liz’s first brain surgery was in 2002, with several months of recuperation and the wearing of a neck brace. It was a short-term fix. Several trips to the emergency room as well as multiple specialist visits brought uncertainty as to when an extremely risky spinal cord and brain surgery would be the only possible permanent remedy.
A lifelong Catholic, Liz relied on her faith to get her through. Once I heard her comment, “Anyone can be knocked over by anything any time….I’m just glad I’ve already been through a lot so I can handle this!” Dozens and dozens of friends and family began praying for her that offered slots for meal drop-offs, chauffering kids to activities, to walking the dog. Liz joked, “please, we’re so grateful, but no more chicken or meatloaf!” Scott responded by emailing everyone with updates and gratitude. In the meantime Liz’s surgery was scheduled for last winter, 2011, with her condition worsening over the previous year.
Liz underwent eight hours of brain surgery last winter. Because her skull was sinking into her neck, a piece of bone was removed from her skull and metal bolts were used to fuse her head to her spine and vertebrae. Liz casually referred to her shaved head scar as a “zipper” and the metal pieces as “hardware.” Doctors told her there was no guarantee of total relief or even of being able to return to driving. With the risk of going into tachcardia from weakened neck muscles supporting her head, Liz was confined to the house for many months. A home aide was hired to assist in dressing, bathing, walking with a walker, everything. Liz would often point out, “If you don’t have faith and laughter in your life, you just couldn’t get through something life this.”
Close to a year later, Liz is still unable to drive, shop, cook, or handle alone many other daily activities we take for granted. Sitting up to talk on the phone or be on the computer places strain on her neck. She is simply unable to turn her neck at all. The financial strain of a full time aide not to mention mounting medical bills (“Don’t get me started on why insurance won’t pay this or that. It will be endless paperwork and appeals to hope to get even some of it paid,” adds Liz) adds to the stress of disability. Vertigo and pain continue to plague her. The family continues to rely on friends for rides for the kids. As if they don’t already have enough on their plate, Liz’s husband has been informed that he will again be unemployed next month.
Through it all, Liz has continued to regularly downplay her condition: “What’s the point of complaining? This is what I’ve got, and I’ve got to make the best of it. Plenty of people are incapacitated by one thing or another! I’ve been so blessed because I have people I love and who love me, I have huge faith, and I laugh about something every day….I couldn’t do it without all three!” Some days she cries from the pain, exhaustion, and frustration at being unable to do what she used to be able to do and with no end in site. Other days she often points out how sometimes seemingly frustrating daily hassles now seem incredibly trivial, even funny, such as traffic or upholstery problems or being unable to decide where to go on vacation! She would laugh over the often ridiculousness of life. “Something like this really puts things in perspective,” she’d say. Liz overcomes the hassles, pain, and inconveniences of her disability every day, not knowing if or when she will ever have her independence back.
In the meantime, Liz reminds all of us who love her that you really just need three things in your life to survive the hurdles: love, faith and laughter. Thank God, Liz has all three.