Cami Walker - 29 Gifts: How a Month of Giving Can Change Your Life

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Table of Contents

This book is dedicated to
my mother and father, Carol and Larry Walker,
who taught me that the best way to solve
your problems is to help another person.

And to my husband, Mark Atherlay,
who held my hand through all of this.

You are all gifts.

Prologue

Desperate Times, Desperate Measures

It is 4 a.m. and I am wide awakeagain. I have not slept in sixty-three hours. Visions of myself crippled, unable to move my arms and legs, flash like red fire-exit signs in my mind. Thoughts spin uncontrollably, running in the same tired circles as I work myself into a full-fledged panic attack. Here I go again.

Im going to end up in a wheelchair. Ill never be able to walk normally again. Ill never find a way to earn a living again. Ill never be able to write again. My friends and family will abandon me. My husband will get tired of taking care of me and leave me locked up alone in a nursing home before Im 40, where Ill be ignored day after day and die before Im 45 from infected bed sores.

Ill never get to be a mother.

Why have I been cursed with this horrible disease? Why cant the doctors cure multiple sclerosis... or at least give me some drugs that actually help? My life sucks. My life is over.

I want to die.

I try to lie quietly, not wanting to wake up Mark, my exhausted husband, who snores loudly beside me. I cant believe that asshole can sleep while Im having a nervous breakdown six inches away.

I whimper and tears stream down my cheeks. My breath hitches, and I start to hyperventilate, causing Mark to stir in his sleep but not wake.

Just like when I was a child, my mother is keenly aware of my cries and comes to comfort me as soon as she hears me struggle. She is next door in our guest room, and Im sure she has been lying awake worrying about me. She is staying with us for a while to relieve Mark, who is completely drained after several months of this daily drama.

My bedroom door cracks open, and I hear my mothers worried voice. Honey, are you all right? Please try not to wake Mark. Hes finally sleeping soundly. Hes so tired.

No, I hiccup softly. Im not all right. The words croak out of my throat, making a frog-like sound. It feels like an elephant is sitting on my chest. I can hardly speak but I manage to squeak out: Im scared.

My mother comes in and kneels down next to me, taking my left hand in hers. I know youre scared, sweetheart. But everything is going to be okay, she reassures and reaches to switch on the lamp on the bedside table next to me.

No, its not! I yell. The harsh words move the elephant from its resting place. I feel Mark startle awake and turn over in bed. My chest begins to heave and my cries increase in frequency. Im not okay! Nothing is okay! Its not going to be okay!

Why cant they get it?

Marks arms wrap around me from behind.

Calm down, baby, he says softly in my ear. Youre getting yourself all worked up again. Take a deep breath and try to calm down.

Mark must be just as overwhelmed and frightened as I am, but he rarely raises his voice.

Just over two years ago, we took our wedding vows on a beautiful beach in Mexico. The photo stands next to the lamp by my bed. There we are, being showered in rose petals and holding hands. We look like we are in front of a fake prom backdrop, but the gorgeous blue sky and turquoise water behind us are real. As we looked out over the ocean, we believed there was nothing but clear skies ahead as we said, I do, and pledged to support each other in sickness and in health.

Who could have predicted that the sickness part would start less than one month later? We returned home from our honeymoon and our world immediately turned gray and stormy as my health took a nosedive. I woke up one day and my hands were weak, tingly, and painful. Then a few days later, I lost the vision in my right eye. I was rushed to a team of specialists and within a week, the diagnosis of multiple sclerosis was confirmed.

Multiple sclerosis is a chronic, progressive disease of the central nervous system (the brain, optic nerves, and spinal cord). Its an autoimmune disease, which means the bodys immune system attacks healthy cells in the body. In the case of MS, the immune system attacks the myelin, a protective fatty layer surrounding the nerves. Think of it as insulation that keeps the nerves firing smoothly. These immune system attacks create lesions in the myelin sheath. I imagine little holes being eaten in my nerve linings that leave areas of raw, exposed nerve prone to misfiring. Each person living with MS experiences a different set of often debilitating symptoms, depending on which nerves are affected. Theres no cure. All that most doctors can do is offer patients medication, rehabilitation, and coping skills. A promising stem-cell treatment is being tested and other research is underway, but for now, MS is a disease that must be managed, not cured.

Primary symptomsthose arising directly from damage to the myelin and nerve fibersinclude fatigue. Fatigue is one of the most common symptoms of MS, occurring in about 80 percent of people. Fatigue can significantly interfere with a persons ability to function at home and at work and may be the most prominent symptom in a person who otherwise has minimal activity limitations.

Other primary symptoms can include numbness, problems with mobility, balance, and coordination, bladder and bowel dysfunction, vision loss, dizziness, vertigo, sexual dysfunction, pain, cognitive difficulty, depression, muscle spasticity, tremors, speech disorders like slurred speech and difficulty finding words when speaking, swallowing problems, headaches, hearing loss and seizures, and respiration and breathing problems. A frighteningly daunting list, but different people exhibit different symptoms.

There are secondary symptoms, toocomplications from these primary symptoms. For example, anyone whose bladder function is affected may suffer from frequent urinary tract infections. Or if someone has a lot of trouble moving and walking, the inactivity can result in loss of muscle tone, muscle weakness, decreased bone density, and risk of fracture.

Neither Mark nor I signed up for this. We both feel cheated out of the life we planned together: the house we planned to buy, the children we wanted to have. Those feel like absurd dreams now, since all we can do is hold on to each other for dear life and hope to come out the other side with our relationship intact.

My mom opens the drawer in my nightstand and gazes down at the large collection of prescription pill bottles, which she spent twenty minutes labeling yesterday afternoon. Each bottle now wears a nametag across its capa piece of blue painters tape with my moms neat, kindergarten-teacher handwriting in red ink. This way its easier to see what each bottle holds without having to lift out the container and search the label for the medication name.

Mom reaches to the top of the table and picks up the spreadsheet that she and Mark created two days ago so they can keep track of what pills Ive taken.

Its been eight hours since your last dose of Ativan, she says. Thats for anxiety. Do you want one now?

Yes, I sniff. Can I take an Ambien, too? I took one two hours ago, but it didnt do its job of putting me to sleep.

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