VANITY HAIR by Nora Logan

Not long after transplant I went to a 30th birthday party in Miami. As with most parties since my teens, the fun started in the bathroom, where we all got ready together. The make-up, dresses and heels came out, the laughter rose and doubled in volume as some of us experimented and others reprised their signature hair and makeup styles. We giddily re-enacted the rituals of our 20s. Put us in a room with mirrors and the task of looking absolutely fabulous, and the years seem to fall away. Sure, there may have been a wrinkle here or there, or a grey hair run amok atop our heads, but my friends looked as gorgeous as ever, armed and dangerous with mascara wands and eye shadow.

As we elbowed each other for mirror space in the small bathroom, my anxiety escalated when I realized this situation, for all its familiarity, was going to be hard. The considerable changes to my physical appearance were easy to ignore when there was only me, but put me in a room of my vibrant, healthy friends and all my insecurities would surface. I had lost a lot of hair, and I was miles away from coming to a place of acceptance about it. As a result of heavy doses of steroids and bodily trauma, my once ruthlessly abundant head of hair was now a sparse desert of wisps, and where my hairline once housed a proliferation of dark curly tendrils were now patchy bits of scalp. As I scraped it back into a tight, pathetic bun—the only style I could manage—it crossed my mind that maybe my hair would never grow back. Dramatic as that view was, it did take three years for it to recover. For a long time it was brittle, grew in cowlicks and stood up straight on top of my head.

Before transplant, I never really considered my hair—it was always there, living a life of its own. After I lost so much of it, I came to consider it as a symbol of my womanhood and an extension of my identity. The freedom I have to cut it short or grow it long, shave it off, dye it, put it in dreadlocks (I would never put them in dreadlocks for the record. But, you know, I could) — is empowering. The loss of my hair felt like a failure, a loss of power. I lived in the hospital for 40 days before, during and after transplant. When I look at photos of my long hair from that time I see it transformed into a raggedy, matted mess. I didn’t actually know I had the option to shower until well after transplant. When my best friend washed my hair for the first time in a hospital bathroom, while I sat on a chair, water spilling down my back, plastic wrap covering my open wounds, I was struck that nothing would feel that good or that awful ever again. The relief and the grief all tied up into one neat gift. By the time I was ready for discharge, the hair felt like a weight on my head and my 108 lb body. When I returned home I needed something to connect me to my own womanhood, to remind me of the feeling of being cared for and groomed.  

All pretence for grooming beyond the washcloth quickie went out the window during those hospital days. The same friend who showered me also brought me travel tubes of deodorant, tooth paste, soap, face wash and body cream, thoughtfully lifted from a hotel by her husband during a business trip. At first, I couldn’t figure out why she would deliver these to my hospital bed and frankly, I was offended at the suggestion. Did I smell? The answer was most likely an unequivocal yes. Later, we’d talk about it and in her view it provided a goal for me to achieve each day. When my will to live waned, and the days stretched out in front of me with no real agenda and I didn’t know what fresh medical hell could show up, the simple act of caring for myself with non-hospital issue toiletries could be a resounding achievement of the day. When the days get dark it can feel near impossible to see the point of any of our normal everyday habits; in a hospital bed, those days, those habits, that kind of normal, seem even more pointless.

So after the first few days back in the comfort of my parent’s home, I needed some semblance of normalcy—of frivolity even. Thanks to New York—the most on-demand city on the planet—I ordered in a professional hairdresser from an app. In retrospect I can’t believe I did that to the poor, unsuspecting stranger who showed up at our apartment. I was still swollen from fluid retention and my scar was fresh enough that it probably pulsated right through my shirt. I don’t remember what her name was, something like Jen or Jill or Alice, but I do remember her face so well. I remember the chair I sat on, and where I had to put my feet because my stretched skin hurt no matter where or how I sat. I remember the pillow I sat on at all times because my ass was so bony, and my skin so sensitive, that even sitting on even a cushioned chair was uncomfortable. And I remember the grace she exhibited as she took care of me. She didn’t flinch at the XXX-treme illness and trauma that sat right in front of her, nowhere to hide. And believe me, I was borderline scary-looking, with the swelling, the bruises, the scar and bald spots.

She set to work with her scissors and found a way to make me look beautiful. She cut off my locks, which and gave me a blow dry. From the neck down, it may have been a war-zone. But this polite mid-western app-requested hairdresser connected me to my womanhood when it felt like I’d never have access to it again.

A couple of months later, after another hospitalization during which I contracted C. difficile, had many more ERCP procedures (little camera, smaller pathways through my abdomen), and threw in a couple of liver biopsies for good measure, my former boss sent me her hairdresser because I was losing a lot of hair daily, and I needed to chop it off. This hairdresser gave me what he referred to as a “lob”. Since I hadn’t been keeping up with the latest styles in my daily trips to and from the hospital, I didn’t know what the fuck a lob was but readily agreed. Who am I kidding, I never in my life kept up with the latest styles. My knowledge began and ended at the ubiquitous Jennifer Aniston cut in 1998. I was touched by not only the generosity of my boss, but of her spot-on intuition of what I needed. After the hard times, any kind of pampering and most importantly, touch was a gift: emotionally, physically, spiritually.

After the second cut my hair was not the same. The drugs and the after-effects of transplant started to take its toll. I’ve been both blessed and cursed with Irish genes on both sides of my family, and I had never been without a thick (and sometimes cumbersome) head of curly hair. I used to long for my half-Filipino cousins’ long, straight, jet black hair as an adolescent and even tried to cut my own “angles” as a 12 year old when they came to visit my family in London. Then came the hair-straightening years: I’d spend hours ironing out my beautiful curls with hot ceramic sticks to achieve the stick-straight 90s Gwyneth Paltrow look. As time has marched on, just like the rest of me, my hair also healed. It happened slowly, and like everything else related to illness, it taught me patience. Now people comment on my hair all the time. They ask if I’ve dyed it, which I haven’t; I have a considerable amount of silver strands, thanks to age and stress. It is darker than it used to be, bizarrely.

I’ve had a few haircuts since that drove me to tears (shout out to public transport for being the receptacle of my tears since as long as I can remember). Not only because of vanity (which, I’ll admit, is a definite factor), but because the cuts act as a marker on my path. And so I need to be held, in a way, if I allow someone to touch my hair. And I need to be seen. It’s not really about the hair. It’s a journey of me coming back to myself. I’ve heard that after chemotherapy, which I took in pill form for over an extended period, hair can grow back stronger and even change colour. I like that it’s darker, a bit more wild and even curlier than it used to be. Illness hews out a clearing between before and after in your life. The clearing slowly fills in, leaving lessons and growing wisdom. Just as the clearing will grow back, just as your hair will grow, so too will you be returned to your Self. That self will have an abundance of new growth that, like spring's re-flourishing, will seem familiar, strange, and wonderfully wild. 

THE MEDICATION GAME by Nora Logan

In January the New York Times published an article about a clinical trial initiated in 2017 by the University of Pittsburgh Medical Center. The study, which is also being conducted at King’s College Hospital, Massachusetts General Hospital, and Northwestern University, follows transplant patients with a living donor organ and then tapers the immunosuppressant medication down to one pill, with the aim to eventually reduce medication to nil.

When I read it, I was elated, but soon enough total jealously and dread set in. This will almost certainly never be an option for me. I’ve read and reread the article. I’m genuinely elated for those patients who will be able to live without immunosuppression drugs. And yet I’m still jealous. I’ve had such a struggle to accept the fact of my twice-daily doses of Tacrolimus and Mycophenalate Acid. Even with such delightful names, I’m still not there. I get the distinct sensation that the drugs are simultaneously saving my life each and every day and honestly, also ruining it. As the article states: “…the drugs are themselves hazardous, increasing the risks of infection, cancer, high cholesterol levels, accelerated heart disease, diabetes and kidney failure. Within five years of a liver transplant, 25 percent of patients on average have died. Within 10 years, 35 to 40 percent have died.”

Photo by  Celeste Sloman , 2017.

Photo by Celeste Sloman, 2017.

I’m young – much younger than your ‘average’ liver transplant patient that skew the statistics quoted in this article, but the truth is that I’m still a transplant recipient and those stats fucking suck. And I still experience side-effects and live with the possibility of complications that may one day arrive at my doorstep after years-long (hopefully decades-long) medication intake.

I’m resigned to the reality, despite fantasizing about the alternative. I have no interest in making a martyr of myself over the medication and its side-effects. Nor am I interested in returning to how I sometimes was at the beginning, the “I-constantly-read-every-side-effect-and-obsess-over-eventualities-like-it’s-my-job” approach. Daily medication that both saves my life and gives me the runs has taught me the very useful technique (in life, in work, in relationship) of being able to hold two feelings simultaneously. Sort of like when I meet a really hot guy in a loud restaurant who knows my friend’s cousin but the words coming out of his mouth make me want to rip my eyes out, though luckily I only catch every fifth word so I can just focus on his jawline and tousled hair rather than the content of his miserable chat. I don’t lose too much sleep over my side effects (except for the common side effect of insomnia, which is depressingly ironic). I had such a rocky recovery, with so many peaks and troughs that in 2017 my doctor told me point blank that I’d never be on mono-therapy. Since the liver is such a regenerative and resilient organ, many liver transplant recipients end up only taking one pill, usually Tacrolimus (Prograf). When he said, in his precise way, that this would no longer be an option for me, I broke down in floods of tears. As per our usual dynamic, he didn’t understand why I was crying (in his defence, I managed to cry at Every. Single. Appointment.)  

Looking back, I can now see his point (what’s the difference between one pill or two? Red versus blue?) I think it’s simply hard to accept that I have to take these drugs that keep me alive. Even if I don’t read them, the drugs do indeed come with such a heavily weighted list of perilous side-effects, and I can actually feel the harm they cause. And in my head (as well as in reality), the fewer pills I’m taking the better.

I’m much too much of a goodie-two-shoes to ever go off-piste or exercise any wilful negligence in modifying my medication intake without getting the green light from the team of doctors. I’ve read some harrowing stories about negligent patients who decide to take their medication into their own hands and as a result suffer awful consequences. I also have too much respect for my donor, my body, my doctors and my community to ever be so irresponsible (and I know what rejection feels like: it feels like death).

There is of course a small part of me that believes that I will one day be that patient who somehow achieves medication freedom (preceded, of course, by spiritual enlightenment). The doctors would exclaim “By George! She’s managed another miracle!” They’d look at the numbers on my multi-page blood tests and call me in for more labs. They’d proclaim, in total disbelief, “Well – this is unheard of, Nora – but these numbers prove that you’re the first patient in the history of transplant to completely and fully accept your liver into your body. You’re a medical miracle. Goodbye now. Please donate your body to science so we can study you at length and then name a wing after you.” I would shake my head, humbly decline having a wing named after me, and walk out of the clinic and into the smoggy sunset. My transplanted liver would just tick away in my body and my immune system would live with it in harmony and ne’er would the two combat again.

That is most likely never going to happen, if we’re being realists (which I hate having to be, another result of readjusting to life with a chronic condition). The meds can’t take away my daydreams—even if they rule my night-terrors! If we’re all talking on our video phones as the Jetsons predicted in the mid-1960s and only a step away from the hyperloop, I can still reasonably dream about zero medication needed to sustain my life.

At Northwestern, transplant doctors are asked everyday whether already transplanted patients are potential candidates for the study: “For now, the answer is that it is too late. These patients are not candidates for these new strategies to modify the immune system. But researchers hope that situation will change as they learn more.”  

So, back to what we already guessed was true: I’m stuck with my medication for a lifetime. Just like any relationship, it will take work and loving compromise (if only in my head) in order to exist harmoniously with one another. Although it does seem that only one of us is doing the heavy lifting here – hand to mouth, twice a day, with a lot of back-chat from the Other.  

Sometimes I wake up in the morning and I forget. I forget that this is who I am now. For a split-second, I’m just Nora, there’s nothing to do but wake up, have breakfast, take a shower, go to work. None of it happened. I’ve just continued on with my life and that liver scare was just that – a scare. It was all just a dream, wasn’t it? And then I remember again. And I make my breakfast, and I have my shower, and I take my panoply of life-saving medication because that is who I am now. And I’d like to be here for it again tomorrow.