Michael Rose is a husband, father, and Licensed Professional Counselor. Michael and I crossed paths in the course of our hikes through the NF Wilderness. I am personally a big fan of Michaels, being married to one myself, and I deeply respect the way that Michael supports and empowers his wife (whom you might recognize as the illustrator for Certainly, Sonder).

His voice is a gift to the NF community, especially to other “NF Support Staffers” who might not have an NF diagnosis, but live with it all the same. 

In honor of May 22 – NF2 Awareness day I knew I wanted a special message up on the blog. Michael’s message is one I constantly want to share with others. So while I continue to attempt to wear him down into agreeing to record a podcast with me, I present: 

Love, Loathing, and Dogs. A Lament for This Wonderful, Horrible, Beautiful Life

My original post was going to talk about our trip to the Outer Banks a week ago. Why not, right? Spring in rural Virginia is almost always sunny and pleasant. Or snowy with an ice storm. Or hotter than the embers of hell. Lucky for us, we had the kind of weather that keeps you opening and closing the car windows as you go. It reminds me that my body’s thermostat is now well over 50 years old, and that warranty has long since expired. It doesn’t matter though, because the two of us are on our way to the beach. 

Kate Bowler and Krista Tippet are riding with us, their voices come through the speakers in Dolby surround. I’ve heard this episode of On Being more than a few times. I think she has, too. It doesn’t matter, though. Kate’s words still land like specific, accurate, and very stiff jabs. After the last few years of listening, I have just accepted that I will inevitably hit “pause.” Contemplate. Rewind. Listen again. Contemplate more. I have come to see Kate has a bit of a sage, perhaps even a muse. She’s more than articulate. A painter with words, unwaveringly insightful, and disturbingly honest. She’s especially open about the hard stuff, which is probably why I have been drawn to her.

So I pause the playback and turn to her, “Did you hear that?” Of course she did. She’s become hard(er) of hearing, but she caught all of that. She usually does. I played it again, unnecessarily, of course. Kate just said that getting her own diagnosis was “like getting stripped down to the studs, and you’re now the bare bones.. of something.” I don’t even have to ask. I look to my right just enough to see the bride nod through her sunglasses and add, “Yep. That’s absolutely it.”

Truth is, I don’t know what it’s like to be on the receiving end of that phone call, especially as a patient. Still groggy from working nights in a regularly-swamped ER, it was my mother-in-law who woke me up that January 2020 afternoon. As she tried to convey what she thought she knew, I heard her daughter (my wife) crying in the background. It didn’t matter that I had been anticipating getting bad news – at that moment, we were all stripped to the studs. 

Then I decided it might be best to come up with “22 Lessons. What I’ve Learned Thus Far In My Journey As a Care Partner to Someone with NF.” First of all, what the hell is up with that title? It’s already a novel, huh? I kept plugging away, and wrote a bunch of “lessons” down. Then I thought “how contrived.” So many people have talked about the things they’ve learned along the way when dealing with a chronic, debilitating, progressive or terminal illness. I’m not sure mine would be some sort of enlightening list. But I churned them out anyway.

I had written little paragraphs and quips, with my lessons numbered. Just to save you the pain of reading through them, among mine were thought-provoking  titles like: “EPIC is great, but MyChart sucks,” “Assemble your Avengers,” “Gallows humor is absolutely delightful,” “You may not use your NF Card, but you should,” “Become noisier” and “Get a Dog, if you don’t have one. If you must, a cat might also be an option, but a dog is clearly better.” That last one is especially true, though. Dogs rule.

See? I saved you from all that.

But, I feel this urge to tell my truth this morning. That raw truth that only you and your partner talk about. Because that’s reality, the real reality of living in the NF world.

So, since I’m being honest, I’m angry. A lot. Like… All the time. Internally, I’m having a near-constant argument. Sometimes I’m a petulant child, yelling, “it’s not fair!“ And then I get ashamed of having that thought, because it is so childlike. But I feel that way nonetheless. This whole NF thing is so unfair. It’s the sheer weight of it all. Because I do not want to force our lives to fit into the 90-day intervals the doctors give us. Lives forced to fit in between MRIs, or the monthly lab work, or the endless raft of referrals being processed. But we do it anyway. And we attend appointment after appointment after appointment. And when you think you’re done with doctor’s appointments, you realize that you need to invite others to the party, too. Lawyers for estate stuff. Crews for home modifications. Changing vehicles for greater accessibility. It goes on and on.

It can be so infuriating.

I’ve also come to have a new appreciation for grief. I used to see grief as a natural part of mourning death. That slow burning and constant achiness that comes with the vacuum left behind when a loved one is lost. Kubler-Ross (ugh, damn you, Kubler-Ross) came up with this checklist of sorts for “grief,” ending with a bright bow in “acceptance.” As if that actually works, right? I mean, I’m a licensed psychotherapist. I was trained in this theory. 

I quickly realized, however, that grief is not just about death. Grief is about loss. I grieve the whole “90-days at a time” thing I just mentioned, for example. But I believe we also grieve losing our ideas of normality. And feeling unable to be spontaneous. And being forced to redefine what freedom looks like. Or knowing that your lives are tethered to medications, and ADA-compliant facilities, and require respite periods, and heaven forbid, being made to deal with insurance companies. Real grief doesn’t even begin to touch that.

As I shared with a group at an NF conference not long ago, grief also presents as carepartner fatigue, hypervigilance, changes in roles and responsibilities, and emotional bankruptcy. Perpetual worry and anxiety and ruminating about any number of things. Constant Googling and Claude inquiries. Anticipation of doom and feeling dread. My own therapist describes it as “always looking for the sniper… where will the next shot come from?” Grief is also the inevitable shift in peer groups, where some of the people closest to you rightly choose to live their own lives. I miss so many people I felt like I knew well. There’s no fault there, though. People move on. They should. While we are so often tied to the NF tether, they are not. And they shouldn’t be. But I still grieve their presence.

I don’t want to make this all about doom and gloom, because it’s not. It’s just me being very vulnerable and honest. I am angry enough, stripped bare enough, and grieving enough to share the first things that come to mind.

The most surprising part, though, is that in the midst of all this is beauty. Yes, beauty. 

During one heartfelt conversation that we had at the beach, Amanda reminded me that, in some wild way, she has come to find gratitude for having been diagnosed. She explained that learning to live a life with NF2 has forced her to do things and experience things she wouldn’t otherwise have done. And, I couldn’t agree more. There has been tremendous beauty in her growth, and beauty in being able to watch her growth.  She’s morphed from the highly-introverted fashionista and sorority president I married, to the increasingly extroverted, artistic business owner. She’s repeatedly done things she’d never even imagined before. She rocks an eyepatch, embraces her drifting while walking, and has learned to love closed captioning. She leads fundraising for brain tumor research at a major university, and effectively and efficiently lobbies members of Congress for research monies, all the while dealing with constant pain and managing the effects of chemo and 30+ radiation sessions to her brain. Every time she drew a line in the sand, she was brave and crossed those lines when her symptoms caused her to reconsider. Yes, it’s certainly bravery, but it’s also incredibly beautiful to watch. And, to be clear, I’m not sure any of those things would’ve happened in the period before NF.

And it’s changed me for the better, too. This journey we’ve been on has influenced me in so many unexpected ways. Our experiences in the healthcare system, with doctors, nurses, APPs, and insurance companies has affected me deeply. These have not always been great interactions, including and especially from some of those touted as absolute experts. Those encounters fundamentally changed the way I practice, and reframed the ways I speak with and treat patients. 

In grad school, we are cautioned about the perils of self-disclosure, and there are ethics classes and seminars about this very topic. As such, it’s not surprising I found that intimate and honest connection lacking in many of the exchanges we had with care providers. Self-disclosure is frowned upon, openly discouraged, and usually a “no-no” in therapy. Don’t get me wrong, there are countless reasons why physicians and other providers keep it simple, brief, and moving during these exchanges, and I won’t debate them here. It’s just that the result was routinely sterile and outcome-oriented conversations with the treatment team.

I found that I disagree. I began to see an appropriate amount of disclosure to be essential in building rapport, bolstering the therapeutic environment, and strengthening the alliance between patient and clinician. So, I pivoted. I made myself available and even vulnerable to my clients/patients in ways I hadn’t before. Because I now believe that the greatest gift we will ever give someone is our genuineness; our truest and most present and raw self. Therein lies the beauty. 

I took a risk. I told patients that they didn’t have to explain the vernacular of chemo or radiation because I understood that language. When they tried to convey what it’s like to book-end their lives in between scans and visits, I told them I had experience with those emotions. When they sheepishly said they were angry with God, questioning their faith, and sick of the endless parade of empty platitudes, I nodded and said, “been there.” And when they just wanted to talk about how scared they are, I responded with “I get scared sometimes, too. Tell me all about it.” 

And they share. They offload some of their pain, and the burden of their lack of normality, and their fears of living in the intervals. The results have been transformative. And there is so much beauty in that.

And so I believe there is something to be gained in this journey. Things I had never considered important now are my most cherished things. A small and intimate circle of friends. The kind that get that you’re often on the struggle bus, aren’t great about calling or texting, and yet quietly recognize and accept that you’re a total mess. Those types of ride-or-die folks love you all the same, in spite of your new and many shortcomings. And then there’s the folks you would never have met and grown to love if it weren’t for this crazy diagnosis. Pals across the country and around the world that truly understand the life lived with this diagnostic code on your chart. They also have an appreciation for listening to music constantly, the splendor of a gut-hearty spontaneous laugh, and soaking up every syllable of a heartfelt conversation. 

Would I trade any of this? Damn right I would. I would punt NF the first second I had the opportunity. But that doesn’t mean that I don’t appreciate what I feel I’ve gained. Because I’ve gained a lot. The shortcomings I’ve seen over these last few years are so often eclipsed by the lessons learned. Don’t get me wrong, I am pissed a lot of the time. But still, what was once so much ire has gradually softened. It is impossible to think that I have not been transformed by all this. I learned my “why” along the way, and reinvested in my faith, too. I try to help others navigate this wonderful and beautiful mess, and I think I am better for it.

Peace to all, 

Michael

PS – get a dog.