I don’t remember the last time, if ever, that I ran three memorial posts in such close succession, but I wanted to mark the passing of my friend Carol Welsh (b. 1970) on the morning of Wednesday, December 29, 2021. Carol died of complications sustained over a 21-year struggle with a brain tumor, a recurrent ependymoma malignant by location.
Carol and I met in college back in 1990: our dorm rooms were adjacent to each other in a cul-de-sac at the end of Lockhart Hall. She pulled me out of the isolation and depression from which I suffered at the time, and brought me, lunch date by lunch date, back into the land of the living. We remained friends for the next thirty-one years. The first decade of our friendship, in our twenties, was pretty carefree in the way of twenty-somethings: pleasant meals punctuated by dessert, coffee, and complaints about the sins of the significant others we were involved with at any given time. (Carol’s caustic-immortal comment on the love scene in “The French Lieutenant’s Woman“: “That’s it? That’s all she gets for being the French Lefffffftenant’s woman?”)
Things changed in the spring of 2000 when Carol was diagnosed–after a few misdiagnoses–with her brain tumor, an initially life-threatening and eventually life-altering medical condition. She spent the next twenty-one years engaged in a relentless, full-time battle against it, a struggle which became the new underpinning of our friendship. Carefree chatter in cafes and restaurants gave way to more urgent matters in hospitals and at the annual Race for Hope in DC. We all gave what we could in the way of support–her family above all–but ultimately, the struggle was hers. She was the one who endured and survived.*
Our last meeting took place in July 2021, just before she went into hospice (or rather, hospice came to her, as she convalesced at home). She asked me, in our very last conversation, to read to her from Elisabeth Kubler-Ross’s On Death and Dying. I read her the first few pages, and we spent the rest of our time together discussing it.
She seemed relieved to be able to discuss the topic of death without euphemism or circumlocution, something she said that her health care providers were generally unable to do. Medicine for them was about victories over illness; death was the unspeakable defeat. I myself was mourning the loss of my wife to suicide just five months earlier, and looking for a way to come to terms with it. And so we spoke candidly about death, in the knowledge that our conversation would likely be our last one, our final good-bye to each other. From an outsider’s perspective, our conversation might well have seemed morbid, almost literally so. But to me it felt more like a meeting of minds, the culmination of a lifetime’s friendship, the best ending we could have hoped for.
It was Aristotle who made battlefield valor the paradigm of courage in Western civilization, a paradigm disputed at times, but never fully displaced. That militarized conception of courage has always seemed to me to be a mistake: there are, after all, ways of facing danger that involve struggling for life rather than taking it. That’s what Carol did, surgery after surgery, procedure after procedure, rehab after rehab, for twenty years. In doing so she taught me what courage really is, replacing the military paradigm with a more humanly appropriate one.
Carol spent more than two decades fighting hard for life, but accepted death with grace when it came. If a life can be likened to a piece of music, her song ended not with a fanfare but on a rest. The melody had its moments of sweet and bittersweet, its changes of mood and tempo, but no bitterness. It reverberates within me still as I come to grips with her absence.
*The “inside story” of Carol’s struggle is better told from the first-person perspective than the third. See the many blog posts and other resources on her website, “Adult Ependyomoma: A Patient’s Story.” See also her National Cancer Institute interview, “Surviving Life-Altering Effects of a Brain Tumor,” and “Onward: An Ability to Persevere and Overcome,” about life with a chronic tracheostomy tube. I’ve previously written about Carol in this post at PoT, with references to newspaper items about her misdiagnosis. Her Caring Bridge site.
I myself was diagnosed with ependymoma in June 2000. I think that was when had heard about Carol. I think she struggled much more than I have. I’m sorry for your loss. After my diagnosis and challenges with this thing I have had a ton of thought about death. I myself might be getting closer as I’m same amount of years since diagnosis. I feel like I’ve come to terms with it. Take care. rv
LikeLiked by 2 people
I’m very sorry to hear this. How did you hear of Carol, if you don’t mind my asking?
So I was diagnosed with ependymoma may/June 2000. Of course initially finding out about this went to the internet. I really don’t remember the exact timeframe had seen Carol’s info. But it was real close to around when both of us had operations. My operation was June 22,2000. Looked for support groups, etc. Found Carol and watched from a distance. My tumor did not metastize down my spine and I didn’t have swallowing problems and corny to say this felt ‘guilty’ reaching out to Carol with her having same tumor but more to deal with. I know sounds weird, but well that’s just me. I’ve watched her for all these years. I know this sounds weird but I’m happy she doesn’t have to deal with this anymore. I have side effects similar to what she dealt with and you never get used to it.
LikeLiked by 1 person
I vividly remember when I first heard about Carol’s diagnosis, which was April of 2000. I was there for her first (very traumatic) surgery, which was very soon after the diagnosis–April or May, I suppose. I wasn’t sure from your comment whether you ended up contacting her or not. My impression-from-afar was that she enjoyed connecting with people interested in talking about ependymoma-relevant issues, whatever their medical situation. I was essentially healthy for the entire duration of her illness, so I had far less to deal with than either of you.
That said, the “guilt” you mention is also natural, as is the reluctance to make contact. I felt a great deal of survivor’s guilt after my wife took her life last year; I probably haven’t entirely outgrown it. I realized, consciously, that it made little sense to feel guilt. I wasn’t responsible for her death. But I felt it anyway. And it’s hard to connect with strangers online. Most of the people Carol ended up connecting with were people she met at the Race for Hope each May (in DC). At one point, the Race had a real communal aspect to it–a big dinner the night before, and a big party after. It scaled down as Carol’s health declined, and became a less festive affair.
I think she would probably agree with you about feeling relief at not having to deal with the burden any more. It was something she said to me over the years, though never very explicitly. She was a very understated person with a very mild temperament, but I could tell that she was irritated at the constant drumbeat of “positivity” people served up. There was often an unstated implication that she had a duty to carry on, whatever the cost.
My wife was much more explicit about not having any such duty. I think–will probably always think–that her suicide was based on tragically misguided assumptions. But I don’t really know. I wasn’t there. We’d been estranged for months, and I don’t really know what was going on in her life at that point.
I’m glad you’ve written, and am glad to hear that your journey has been less arduous than hers. I hope it stays that way.
Thank you. No I never made contact with her and after seeing this I regret it. Always thought she was sweet and that kind of fight is exhausting. I don’t think I’m “out of the woods” so we’ll see. I’ve chosen to just let things ride out naturally with no intervention, this the constant pondering what death is. I fight a balance problem and double vision (although corrected with glasses for the most part), my prescription tends to change all the time as I fatigue throughout the day lol so it’s frustrating. Anyways this more being about RIP to Carol. I must say I wish I would have contacted her. Just would have felt guilt discussing how we had same troubles but she had more. It’s weird. Anyways I’m glad she was able to speak with you frankly. You are right! You can’t speak with just ‘anybody’ about this and them be able to give back a relevant discussion. Has to typically be open minded or someone same situation
Carols death affected me differently than I thought it would. I kinda feel her loss and didn’t speak a word with her. Take care.
LikeLiked by 1 person
She was sweet. The way she came across in her website was completely genuine. That’s what she actually was like.
She had the same symptoms as you’re describing. I seem to associate those particular symptoms with the earlier part of her struggle, closer in time to the surgeries. But the fatigue was a constant, and balance was, too. She had to have her double vision corrected with lenses as well.
I’m sure there were literally thousands of people who read her blog or the material on her website, and didn’t contact her. It’s good to know that you got something out of it. That website was really the labor of her lifetime, and is a kind of self-made monument to her. She changed my life for the better, and I’m glad to see she changed yours.
Oh ya. She’s been in my thoughts daily since all this. Yes I have prism in glasses to correct double vision. Balance is way bad… I walk like a drunk guy. As for Carol I always kinda felt a connection from afar as I would call it as she was diagnosed and surgery very close to same time as me. Plus same age. I’m glad she had you to talk to. Tough finding someone you can talk to and open up. Take care, rv
What a beautiful tribute for a beautiful person. I am searching for an address to send a condolence card to Carol’s sister Margaret and family. I am a nurse at UVA Health System and had the privilege to care for Carol over the last 11 years. Would you be able to help with an address?
Thank you, Amy. I’ll send that to you privately to your email sometime today.
Carol is my sister-in-law. Thank you for this beautiful reflection, Irfan. Your perspective as a good friend of more than 20 years is both comforting and enlightening.
LikeLiked by 1 person
Thanks so much, Steve. I greatly enjoyed your reflection on Facebook, and would be pleased to have it here if you’d like. Of course, I understand if you prefer to keep it private.
Here is the obituary that appeared in Princeton Alumni Weekly:
The photo seems to have been taken during her college years. It’s how she looked when we were in college.