On Raising a Child While Fighting a Disease

by Elizabeth Brown

The disease announced itself after giving birth. It often does in women. My daughter was born in October 2007. But right when I needed the most strength, my life force was pulled from my body like a magenta yarn from a weaver’s spool, slowly at first then with an unrelenting speed spinning on the loom’s spindle. Lost in early motherhood’s bleary yet blissful fog, I felt these sharp, hot pains in my hands and the stiffness in my limbs as an inconvenience, much like the sensation of the placenta sliding forth from the womb after the baby has sprung: an afterthought undetected in sheer exhaustion.

It wasn’t until two years later that I received an accurate diagnosis. Tests done in 2008 did not reveal much despite the acute onset.  But in July 2010, a blood test revealed it – rheumatoid arthritis, an incurable auto-immune disease in which the body’s immune system turns on itself and attacks and destroys healthy parts of the body, especially the joints, causing bone and joint erosion. Antibodies and fluid collect in the joints and cause swelling, stiffness, and pain which can lead to partial or complete disability. RA is chronic. It must be monitored and treated so it does not attack the internal organs, especially the lungs and heart, and cause death.

“You are likely to lose some function. How much will only be determined in time as we see how you respond to the medications,” my rheumatologist said at the appointment where he delivered this bad news. “Today’s drugs are so advanced. We don’t see the kind of loss of function we saw even ten or fifteen years ago. As recently as the 1990′s, a diagnosis of RA usually meant a death sentence,” he added.

            “Thanks,” I said, trying hard to fight back tears.

            “We are going to treat this aggressively, very aggressively,” he reassured me. “Your livelihood depends on it.”

            My entire life depends on it, I wanted to tell him. I am going to fight like hell. I am a violinist. I am a mother.

            At a recent appointment in May 2012, my rheumatologist turned to me with trepidation in his voice. A very articulate man, he stumbled over his words in a way I’d never heard him before.

            “Your right wrist is not good. It has shown significant damage since last year’s image,” he said. Here I am, only two years into diagnosis, and I’m already hearing words like ‘irreversible damage’ being thrown about by my doctor. He saw me staring sadly at my swollen hand and wrist. I shoved it into my slacks pocket, not wanting to look at its misshapen form any longer.

            “Ready for some real combat?” he asked. He tried his best to soothe my fear with yet another plan of action, like a maneuver akin to a military stratagem, despite the fact that there is little to no   hope of conquering this disease.

            “Having RA is like having an unruly child – one that is driven to hissing tantrums where control is the goal, management the mommy mantra,” I replied, trying to laugh my way through it.  Every mother knows when her capabilities are thwarted. It’s an unspoken “mom thing” – a power bestowed upon every parent simply by the act of being one.

             Shortly after that visit, I was with my daughter in the park trying not to vomit due to the nausea and stomach upset from all the additional medicines my doctor put me on. I didn’t want my daughter to see what or how I was feeling.

            “Mommy, look what I found,” she said, holding up an earthworm in her sandy four-year old hands.

            “I think that worm wants to go back into its hole,” I said. The worm floundered about, thrashing itself, flip-flopping senselessly. Instead of expressing motherly wonderment and excitement, I had to fight to stay in the moment, not to see it as what I might become: my daughter holding me up, taking care of me while I was that useless worm. It is strange how the simplest image can be so powerful. Everything gets reduced to essentials in motherhood – even more so with chronic disease. I needed to think of a plan. I needed to think like a mother.

            RA is a disease of opposites. Like the singular squirming repulsiveness of the earthworm contrasting with the fluttery opulence of the butterfly, so this disease seems to point out extremes. It constantly forces me to examine how I deal with self-reliance and accepting help from others. I want my daughter to learn to count on herself – to be independent, assertive, and no-nonsense. She must be strong. But, with this disease, I am forced to show her that it is necessary, and it is alright to have to ask for help sometimes. Some days, I have needed to elicit help: someone to open a jar or thread a needle, to type an essay for me, or to lift a heavy object. I am forced to stow away my pride and  my “I need nobody” independence. RA  has made me come to terms with my bouts of bungling. I have to laugh my way through moments of ineptness.          

            I remember in 2008, although I didn’t know it at the time, the disease had announced itself. While my six-month old daughter was still sleeping in her crib, I woke up to a body that was stiff, not pliable. I couldn’t move. I knew something was very wrong. Panicking, I rolled myself off the bed and slithered across the floor to phone someone for help.       

            Eventually, a friend, who had once been a boyfriend, came to help me. Whereas, once we may have shared passionate moments long ago, naked flesh wrapped upon naked flesh, now he spent the day dressing me, helping me up and down onto the toilet, feeding me, and taking care of my daughter.

            “It’s going to okay,” he said as he hugged me reassuringly.

I buried my face in his chest, unable to wrap my arms around him, and sobbed, sensing with palpable certainty – with a mother’s intuition – that I was losing something precious: the mother lode of good health. Without my friend’s chivalric aid that day, I wonder what would have happened as I tried to care for my daughter. She would have been abandoned there in her crib with me unable to pick her up, feed her, or comfort her. RA can steal one’s self-pride. No knight in shining armor can help. But, I will not let  RA get away with such behavior. It is not going to win.

            I want my daughter to learn that one can never know what someone is going through just by looking at him or her. Even though I may look healthy on the outside, I am not. My life is a constant monitoring of T-cell and helper cell counts, C-Reactive Protein tests, tests for RF and CCP antibodies, imaging, sedimentation rates, X-rays, and MRI’s. The medications I must take are expensive, even with insurance, and consist of low-dose chemotherapy drugs, immune-system suppressors, and anti-inflammatory medications. The side effects of these medications are often worse than the intensity of the disease, but I am getting more and more used to them each day as I battle my flare-ups, all the while vowing to never surrender to the chronic pain and unrelenting fatigue.

            Once my daughter and I passed a woman on the street who was struggling to walk, obviously dealing with a serious disease.

            “Poor lady,” my daughter said.

            “It’s too bad she is struggling. But she is strong. Look at her getting around and living her life,” I said.

            “Yes, she’s a super lady,” my daughter replied.

            “Yes, she is,” I said. She has to be. I don’t want to be a mother fighting a disease, but I am. I can’t fall apart—I need to take care of a daughter. But it is my daughter who keeps me going. Her needs have the power to push me through the pain, forcing me to move through it, and to accept it.

            Doctors don’t know what causes this mysterious condition. Is it a virus, genetics, environmental, stress? The disease secretly envelopes around the tissues and takes hold of the body. There is no cure or magical respite coming. The pain ranges from mild to severe. It can be a dull ache but it can also be sharp, hot, and incapacitating at times, too. There seems to be little rhyme or reason to the pattern of pain. But it forces you to deal with it and to accept it very quickly.

            I try not to make my daughter’s days all about my RA. She needs to explore, to read books, and to paint pictures. But my daughter has begun to understand that she is living with a mother in chronic physical pain. She now knows that my styling her her ponytails, my brushing her teeth, and my tying her shoes have become quite difficult for me.

            “Does it hurt, Mommy? Let me hold your hand,” she says. Her delicate fingers, untouched by disease, might not look like they have the power to soothe, but her life energy and spirit enter my sore digits and they are relieved. Even if the relief is only temporary, its effect reminds me of my earlier years, before disease, when my sleek, adept hands could perform the most intricate of tasks like fixing my doll’s jewelry as a child, or minute instrument repairs on my violin as a teen or adult, something like a surgeon operating on a body.        

            Life has a way of preparing you for the future. In time, I would take on great levels of pain and tolerate them well: injuries from sports or accidents, repetitive stress injuries from playing the violin (tendonitis, pinched nerves, and muscle aches), and of course, the mother of all pain, childbirth. All of these were like a training ground for RA’s pain – a vicious “devil” that gnaws at my inflamed joints in a raging fury, wakes me up at night more than my newborn daughter ever did, and whose raw, unendurable persistence tries to wear me down every chance it gets. I use acupuncture, self-hypnosis to ease pain and increase blood flow, and a whole host of other remedies to deal with it. Sometimes, I can function at a superior level under huge amounts of pain, but I would prefer not to. Unfortunately, RA doesn’t allow such choices.

            I am teaching my daughter how to deal with pain. I want her to tell me when she is in physical or emotional pain, so we can fix it or learn how to cope with it. She is learning to be vocal about getting her needs met.

            “Mommy, I am sad.”

            “What are you sad about,” I ask her.

            “I missed you today.”

            “I missed you too.”

I will then soothe and comfort her in my arms and let everything stop around us. This is as necessary for me as it is for her. Her relief becomes my own. Experiencing life in the present moment brings a true sense of calm. I have learned to manage only moments, not an entire lifetime.

            Lost stitches of the past need to be caught up and woven anew with threads of the present, sewn together into  a quilt of destiny: wrapping wounds, soothing and protecting dreams, guiding tomorrows.

 How this disease will take over my body still has yet to be seen. But I can’t help question my ability to parent through all this. Will bitterness take over? Will the disease take away my ability to be a mother—a good mother? Will it take away my focus on what my daughter needs because my needs are going to be so great?

            I hide my disease from most of the world. I am afraid of the stigma and the reactions. I fear if people know, they will pity me or “sum me up” or package me away as sick or disabled or defective. I worry how others might blacklist me from the musical world if they find out. Will others demand less from me? Will I demand less of myself?

            I am swallowed up in a deep chasm, somewhere between light and total darkness. I am like the worm that must live in the cold earth but that also needs to come out for the luminous warmth of the sun. I teeter between a healthy life and a completely disabled one. I am happy here in this spot because I know I will never be cured so I can’t be a part of the healthy world. Staying somewhere in the middle means that I will never drift to the opposite extreme – total disability. I have to live a life while I am dying slowly, at least without the constant use of medications to keep me alive and prevent me from being buried in that total darkness.

            But I can’t hide my RA any longer really. Like that worm I need to come out and feel it all, live it all. My daughter is aware now. I must show her who I am, and I can’t shelter her from who I might become.

            It is all about survival. What better way to do this than to look to Nature: to find what is predictable and constant; to search again for what is pure and beautiful; to embrace that which does not let you down. But Nature brings renewal. It adapts and stays strong through it all – the unending cycle of the seasons; the worm morphing into the butterfly; and a girl becoming a woman and mother.

            Nature and the body seem the same to me. Both are stunning wonders that can calm, can move, can catapult me into other dimensions with their intoxicating beauty. But both are impermanent and under attack. All living things, like Nature, are dying a little each day. This I have found to be the most beautiful of all about Nature and about the body. Their spiritual substance – their richness lie in the simple fact that neither will last forever. My body will be long gone before my daughter’s life is over. I hope Nature will still be there for her at the end of her life. Nature and the body change. They must. There is unspoken, remarkable beauty in accepting that. There has to be.

            I am allowing my daughter to experience my transformation. We are slowing down, taking time to experience the moments we are given, being outdoors more, seeing it all with new eyes: hers because she is fresh to it all and mine because I am viewing everything differently now that I have RA.

            At this moment, my daughter is bringing me a butterfly. Perched on her finger, it flaps its wings in the spring sun.

            “Mommy, look at the butterfly move its wings,” she says. The fragility of its tissue paper wings and spindly legs do not make me pity it. I want to be the butterfly. I would need the eternal warmth of the light to fly and stay alive. I could see the beauty all around me. I could soar through the air unaware that I float between dying a little each day and stone cold death.

            It is a myth that if one touches a butterfly’s wings, it dies. One only removes some of its wing scales. This disease has strongly rooted itself in my body, but it has not been able to exact its toll yet. It may have taken away some of me, but there is still more of me to give.

            As my daughter holds up the butterfly for me to inspect, it flutters off, swooping, swerving, free to be itself. My daughter and I run after it. My feet seem light now. I am lifting up into the wind: flapping, flying. Now, the thread of evolution extends out before me – my daughter is an extension of myself, I am a product of my parents and their parents before them and all of who have come before me. The indomitable strength of natural history flows endlessly, giving my power as I fly – unraveling, reaching, spinning into infinity behind me. I see my daughter there as I float above her. Her young legs and arms are mighty, her body is energetic, and her mind is full of the abounding spirit of youth. She is strong; she is resilient.

I have prepared my child for this all along.

Exactly like a mother should.

Elizabeth Brown is a writer, writing teacher, violinist, and single mother by choice.  She studied creative writing at Northwestern University and at Goddard College where she obtained her MFA in Creative Writing. Her website is www.elizabethmbrown.com where you can also find her blog which will be launched soon.         

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