where is the love?

Happy holidays, everybody.

I haven’t dropped off the face of the earth; I promise. In fact, during all this time off, I’ve thought a lot about some profound aspects of disability acquisition, which I think is important to share. I can only speak from my own experiences, of course, but I don’t presume mine are unique to only me.

Since we are in the midst of holiday season, I thought it would be appropriate today to talk about the importance of love in your journey towards healing.

Now, this may seem oversimplified, but yesterday I was down with a minor bout of food poisoning. Because I’m rarely, if ever, sick, I tend not to tolerate illness well, so I become sort of an overgrown baby and completely incapacitated. I require people to comfort and nurture me, which is more often than not met with equal intolerance and annoyance from the people around me.

My mother has always been more nurturing than my father, whose reaction yesterday was just to yell at me. In response to my phonecall to my mother asking her to buy some soup, he hollered, “WHY IS IT SO IMPORTANT TO BUY THAT SOUP NOW? WILL SHE DIE IF SHE DOESN’T HAVE IT??!”

And because I was drifting in and out of consciousness for about twenty hours yesterday, he didn’t speak to me until he walked by me, sprawled out on the living room couch after taking some stomach pills. I said nothing to him, yet it came anyway.

“Don’t just lie around anywhere you feel like! You know what your problem is? We tell you every day to wear warmer clothing and then you go off and get sick! You never listen!”

My mother, on the other hand, had been kind enough to check up on me every now and again, bring me plenty of soup, and offer me those pills.

To his credit, my father was always there for me when I was in the hospital. During the interview with my neurosurgeon for University of Chicago Medical Center, Dr. Yamini had mentioned, “He never left her side.” And during that hike up the Delicate Arch trail at Arches (see my post about it in May, or refer to the UCMC article to see the photo they liked so much), he acted as my crutch up and down the trail.

When matters don’t seem dire, though, he likes to take the angry road. I can only wish he were more delicate about these matters, but the only way to deal is with humor.

The role love plays when loved ones fall ill, or undergo some kind of trauma, is a very necessary and integral one.

Caretakers of all flavors (medical practitioners, therapists, family members) express their love in service and companionship. I remember my mother would help me comb through my hair when I was in the hospital — back when the scars on my head were still fresh wounds and still sensitive — gently and carefully so as to not hurt me. She would also rub cream on my feet after having bathed with me, nursing my heels back to baby soft.

My friend John would walk beside me once I was discharged and still using a cane, warning me, “Be careful here; the sidewalk is really uneven!” always ready to catch me in case I stumbled.

My attending physician at U of C, Dr. Schwab, was always around to make my family and me laugh while I was living in the hospital. His sense of humor kept our spirits up, and better yet, when we were anxious, he would put on his serious hat and comfort us.

One of the most touching incidences of love I ever witnessed was that of a girl I was at the Rehabilitation Institute of Chicago with. She was twenty-four and had been in a highly traumatic car accident with her husband, who’d managed to get out with a minor whiplash injury, I believe.

Her injuries were extensive: both brain and spinal cord injuries, shattered pelvis in six places. We had a lot of therapy sessions together, as she too was paralyzed on the left side (and used to be a lefty at that). But regardless of the gravity of her situation, her support system was amazing.

Her mother was with her all day, every day, it seemed, and her husband, though there slightly less because he was probably working, was ceaselessly affectionate. I could see the devotion in his eyes as he helped take care of her.

Love is what makes us great. And before any of you start rolling your eyes, please hear me out.

I was once in a toxic relationship with somebody who, despite his beautiful heart, felt victimized from his past. This part of his nature sought out other “victims” to connect with, and initially when I’d shared with him my story, he felt an instant kinship — a sort of awe — with me.

It didn’t seem problematic at first, until he began to fall out of love, and my condition began to weigh him down. Later, he would tell me things like “I can’t be with you until [we can both run out of the pouring rain together, or almost missing the train stop isn’t an issue anymore]” or make me feel like I was useless the way I was. He would stop just short of insulting my entire intellect, but he would make remarks on my supposed “inability to work,” despite the fact that I had a fully functioning mind. Because of my lack of self-respect and clear “dad issues” (like I said, “angry road”), I just took the abuse.

Mind you, quoting him out of context is neither fair nor an accurate representation of the nature of our relationship. Because we were so close, we were both quite frank with each other, but what he failed to realize was that by talking to me in this way, he was essentially blaming me for my physical condition, which was equally as uncalled for as if I’d decided to hold him responsible for the misfortunes that had occurred in his past.

I should have stood up for myself. I should have insisted that I did not have to feel guilty for being with him, for holding him back. Acquiring this physical disability had already done enough to frustrate me — trying to come to terms with no longer being able to run when I had to and needing to prepare especially early for train stops was heaviest on me and not him — and I didn’t need his reminders. It got to the point where my pushing myself to pursue rehab was a favor to him and no longer to me.

What he expressed for me was no longer love; it was the small part of him that didn’t love. And it eventually came to crush my spirit and debilitate me for the next two and a half years.

To those of you who are with somebody going through a traumatic injury or recovering from something, please know that the biggest thing you can do for them (and you) is to love them. Accept them for who they are, and understand that the burden, if I may call it that, is already heavy enough on them and that it is not loving behavior of you to pressure them into being convenient to you. If he or she is lagging behind, it’s due to necessity and not out of laziness. It is a reflection of you and your inner goodness and love if you choose to slow down and walk beside your loved one. Like my friend’s husband, who was with her through it all (and still is to this day, two children later!), the greatest thing you can do is offer your unconditional companionship. If you must, ask questions; try your best to understand. Part of why I write this blog is to spread awareness and speak for those who are like I once was and do not ask for what they actually need.

And believe me, it does not go unnoticed, because unfortunately fewer people than is ideal tend to think to do so.

(As an addendum to my best friend who recently apologized for letting it occasionally slip her mind to wait for me as we walk, the onus is on us to forgive those who genuinely forget.)

Remember that the condition does not define you, and that love comes in all forms. Don’t think for a minute that I’m only talking about husbands, wives, girlfriends, or boyfriends. The same goes for friendships and professional relationships, family members.

Love is what makes us shine, so please remember to be bright even after the holidays are over: Your spirit depends on it. What goes around comes around.

To our healing,