I lie down on a beige two-cushion couch not much longer than I am, under a heavy blanket, months before Father’s Day. I’m wearing long pajama bottoms, wool socks my son Kyle helped me pull on to cover toes that just can’t seem to stay warm during the coldest winter I’ve ever experienced – because my fingers aren’t strong enough to allow me to put them on myself – dose off periodically and watch TV when I have enough energy to remain awake and sheepishly accept every time my wife Tracy brings me something to eat or drink.
I haven’t taken a shower and dread the thought of having to stand in a slippery tub on two fast-fading legs and numb, but tingly feet that couldn’t pass a DUI field sobriety balance test, the nerves and muscles in them are in such disarray.
Kyle, my 12-year-old, long-legged, high jumping son, born in the shadow of the 9/11 attacks, sits at the dining room table, quiet, contemplative as usual.
Lyric, my 9-yea-old daughter, who’s been told most of her life she’s a daddy’s girl who looks just like the man who helped conceive her, seems enthralled by one of her Disney Channel favorites. She’s not laughing as usual, though.
I hobble to my feet, I mean my right foot, using my weak arms to traverse the couch to a waiting office chair equipped with three, two-sided black wheels and two padded arms.
I take a deep breath while trying not to be mad at God for allowing some auto immune disease called CIDP to out of the blue rob me of most of my strength and almost all of my dignity, this as the white blood cells designed to protect me instead continue attacking my nervous system, causing nerve damage and muscle atrophy for reasons even neurologists at Harvard Medical School-affiliated hospitals don’t know.
I slowly lift my left knee onto the chair’s burgundy-cushioned seat while hopping on my right foot.
“You need me to push?” asks my wife of almost 16 years, swiftly rushing to my side.
“No, I got it,” I return, comforted yet horrified by the offer.
I hold onto the chair’s arms and push with my right foot on the old, brown carpet.
Lyric suddenly abandons the Disney Channel, briskly walks out of the room and heads to the dark of her bedroom closet. As I continue struggling toward the bathroom, I overhear the talk that takes place after Tracy goes to comfort and cradle our youngest child.
“What’s wrong, Lyric?” she gently asks.
“Daddy can’t even walk down the hall,” Lyric answers through a sniffling, uncontrollable cry.
Trying to hide the changes
There have been many rough days dealing with CIDP. But not many were tougher than those few moments that morning.
For weeks, I had been trying to be the dutiful, poised father who would model for his kids the right way to deal with unexpected, prolonged adversity.
As I felt the disorder progressing, first slowly, I still wanted to be able to deploy every daddy trick I had learned to still seem like the same old daddy, the one who was able throw his kids high in the air just to see the unimaginable joy on their faces, to hear high-pitched giggles emanate from their mouths; the daddy who swatted away their shots on the basketball court, prompting them to join forces to try to defeat me, not knowing that’s just what I wanted to see, a growth in their love for each other and cooperation and teamwork; the daddy who’d beat them in every foot race, but not by too much, so they’d be inspired to push harder the next time; the daddy who’d give them playful pain threshold tests by squeezing their hands tighter and tighter until they begged me, on the verge of tears, to stop – then begged me to do it again … and again.
CIDP’s advance was making it impossible to keep conducting those daddy tricks as my legs became too weak to run, my fingers too atrophied to squeeze or even hold my children’s hands. I tried to hide the worst effects of it from them for as long as I could.
In my kids’ presence, I continued walking on feet that felt as though they were on an endless bed of heated pins and needles, no matter if it was a trip to the park across the street or a mile and a half walk to church.
When my wife helped me pull on my socks or helped unbutton my pants, I made sure we were in the bedroom when the kids were in the living room watching TV.
When I was no longer strong enough to carry a sleepy Lyric to her bed, I’d stroke her hair, gently wake her, but ignore fragile 9-year-old arms reaching for me to lift her, tell her a joke while walking her to the room before tucking her under her blanket and whispering a prayer.
I’d smile when I didn’t feel like smiling.
Sharing the truth
But soon, no amount of tricks or advanced thinking could hide from my kids what CIDP was doing to me, aging me what felt like 40 years in 40 days. And for the first time, walking back from a report card night at my son’s school, I stopped and sat on a park bench with my kids and wife next to me, the discomfort in my feet too much to keep moving without a break. And I did it again before we reached the public train that would take us home.
The daddy I was desperately trying to continue being was officially dead.
That’s when I decided to sit Kyle and Lyric down, tell them daddy was facing something serious, surprised by the tears welling in my eyes as I spoke.
“No matter what happens, we’ll deal with it as a family, together,” I said with a stern but cracking voice as they listened stone-faced, looking at me but not wanting to, as they sat on the couch that would soon become my second home.
Then my treatments began, which led to a nine-day emergency stay in the hospital. My oldest sister flew to Boston unexpectedly to take care of “my little brother,” allowing Tracy to stay at the apartment with the kids at night to maintain the usual morning school routine. Tracy’s mother also came to help fill the parenting void in my absence.
Every time Tracy brought the kids to visit, I made sure to dump the hospital gown for everyday clothes and walked with each of them alone just to talk, trying to sound like the daddy I used to be, up and down the staid hospital halls, daring my numb feet and weak legs and ever-present, 103-degree fever and groggy brain to stop me.
The day Lyric ran to her room crying, I had the first of an as-yet diagnosed blood clot caused by the CIDP-fighting infusions, called IVIG, I had been given. That clot showed up on the bottom of my left foot, making it impossible to walk. The next would show up in my calf and back of my knee, prompting a pause in my treatment because it was the kind that kills 100,000 Americans a year. And there seemed to be daily setbacks – leading to weeks on crutches and being pushed in wheelchairs by my wife – making it feel impossible to be daddy at all.
When my energy level allowed, I found ways to be a different kind of daddy.
Following a new fatherhood path
I’d put as much bass into my voice as I could muster to bark instructions from my perch on the couch to the kids, trying to lighten the load of double-duty parenting I knew my wife had uncomplainingly taken on after my sister and mother-in-law had to head home.
I’d quietly pull my son to the side, reminding him of his importance to the family, particularly during tough stretches when we’d need him to dip into his deep well of compassion and insight to help pull all of us through.
I’d cradle my daughter next to me on the couch during the day and make up the kinds of silly, scary, two-minute-long bedtime stories I knew she couldn’t find in books. And we’d laugh before she dozed off to sleep.
I stopped hiding CIDP from them – because I couldn’t even if tried – some days asking one of them to help me with my socks, the other to zip up my winter coat. Then they began spontaneously asking if I needed to take a break as we walked or help my up a flight of stairs or give me their seat on the train or bus or carry a glass a water for me at dinner time because I needed both hands to keep my plate steady.
And I saw them mature in ways I didn’t expect to see – Kyle forcing me to examine my view of faith in times of strife – even as we struggled, and continued struggling, with everything from the normal battles with homework and keeping their room clean and their level of pre-teen whining and annoying fighting down.
Thankful for support, health care
I saw them get close to my brother Willie – a man who has been for years spending thousands of dollars to fight for the right to see two of his kids, about the age of mine – when he took a vacation from his job as an air traffic controller in D.C., packed his wife and young son in a car, drove to Boston and stayed with me and the kids for a week in that tiny apartment when Tracy needed to be away for a few days.
That week I was in and out of the hospital receiving more treatment, this time infusions of steroids that played havoc with my energy level, causing me to miss a school event Lyric badly wanted me to attend. Willie went in my stead – Lyric was ecstatic – teaching me that sometimes the best thing a father can do for his children is to let other caring adults help take care of them during the moments we aren’t, for whatever reason, up to the task.
I’m more up to the task today, in large part because I had a wallet-sized white card with the big red letters “Aetna” on it, allowing me access to a system that is slowly but steadily nursing me back to health.
I played football with my son in the John F. Kennedy Park near Harvard University recently and faux running games after school with a daughter who is happy to beat her now slow-footed dad in short and long sprints.
The three of us were back on the basketball court this weekend, enjoying the time, even though I can’t get the ball up to the hoop consistently or move very well. My recovery is far from complete and isn’t guaranteed, but a health insurance card worth more than its weight in gold has me on track to reclaim in the coming months much of what I lost.
I could do none of the things I recently did with my children only weeks ago. Before the treatments, every day I rapidly got worse, prompting a Nigerian journalist friend of mine to say that in her country, a man with a condition like mine would have been prayed for and told to be thankful for the life he already lived because there was little hope of getting better.
The truth, though, is that even in this country, millions of Americans – and hundreds of thousands of South Carolinians – have little hope of fully recovering from or successfully managing serious, chronic illnesses because they don’t possess an insurance card like I do.
The reporting I had been doing the past few years, advocating for health reform, before being forced to experience the system from the other side, was incomplete.
It never crossed my mind that access to good, comprehensive health care could help fathers be the fathers they desperately want to be again.