Dear Friends and Family,

As I write this, I am approaching a year of living with constant disabling pain in the right side of my head and neck, which has also in recent weeks spread to my right arm and hand. Some of you may remember seeing occasional updates I posted to Instagram the first few months after this started. Some of you do not have social media and have had no idea anything was wrong until now. A few of you have received very brief updates from me directly or from those close to me every several weeks or months. Only a very small number of our closest family and friends have been informed of what has been going on in recent history, and even then, no one other than Lucas has had any idea of the details and depth of information that I will be discussing in this letter. While I am going to do my very best to paint an accurate picture, it will be difficult to capture all that has transpired over the past year.

A year ago, I was in my sixth year of practice as an attorney, and I had just started a new job. As with my earlier jobs, I did not make a big firm salary and certainly not as much as people think when they hear “lawyer,” but I didn’t care—I always prioritized doing the work I loved to do with clients I loved to work with and co-workers I considered dear friends. I enjoyed weightlifting, hot power yoga, hour-plus long walks with my dog, home improvement projects, reading, and staying busy and productive. Lucas and I eloped a few months earlier and we were building a joyful, blissful, exciting future. I felt I had really “made it” and that everything would be relatively smooth sailing. I was healthy and happy.

Fast forward to today…for nearly a year, I have suffered ever-worsening and spreading debilitating pain in the right half of my face, head, neck, and more recently in the last couple of months my right shoulder, arm, and hand. I have not worked since October 2022, and day by day, the things I can still do without quickly and significantly worsening pain (not that it ever completely stops) has grown shorter, while the list of things I am afraid of has become overwhelming.

Any amount of human interaction requires me to cushion about one week on either side for preparation and recovery. I now largely avoid making plans, social or otherwise, and on the rare occasion I do, I usually cancel last minute because of pain. When I do keep my plans, no matter how simple or enjoyable, I almost always break down crying in the hours beforehand because I am so filled with dread and fear of how much it will hurt.

I have limited use of my right arm as lifting, pulling, gripping, and raising my arm close to shoulder height almost always causes a spike in pain as well. Though I do my best to stay active and do find some relief in movement, I cannot manage more than 20-30 minutes of walking or other light exercise, and the variety and intensity I used to enjoy is all but gone.

There are a lot of things I have stopped being able to do—or, I have stopped being able to do them without paying a monumental price in the form of a pain flare, including:

• Talking (on the phone, in person, or otherwise) which means having fewer conversations with fewer people, shorter in duration, and less often.

• Sitting for more than about 20 minutes for any reason, whether that is to enjoy coffee on my front porch in the morning, have a meal, go out on a date night with Lucas, get lunch with a girlfriend, or even driving to run a few simple errands.

• Doing anything that requires near focus for more than a few minutes, including anything with a screen (phone, computer, TV, etc.) or a page (whether reading a book or writing in my own journal).

• Putting on make-up and washing, brushing, or styling my hair.

• Wearing a lot of clothing staples and favorites I always have because even that small amount of pressure is enough to significantly inflame my symptoms.

• Doing a lot with my right hand, which is also my dominant hand, including things as simple as holding a fork, opening doors, writing, washing dishes, drinking water…and even holding Lucas’s hand.

• Emoting and using the same often nearly cartoonish facial expressions that I am somewhat known for to express myself, and other such body language like nodding or shaking my head, or shrugging my shoulders, etc.

This is just a short list of examples of everyday things in life I once took for granted that have become agonizing, exhausting tasks. Even now, Lucas is helping me type this document because I am unable to manage it alone. Absolutely everything in my life has been starkly impacted by inescapable pain.

I have never known anything like this pain. The nature of it is constant throbbing tightness and tension in some areas with pins-and-needles in others, with episodes of severe stabbing, shocking, and/or spasm. Above, I generally referred to the impacted areas as right-side head/neck/shoulder/arm, which is accurate, but may not conjure the host of structures this encompasses for me, such as my eye, ear, cheek (inside and out), palette, tongue, throat, lips, and chin. I have also suffered occipital migraines every couple of weeks for the last few months, each lasting 24 to 72 hours. Perhaps the worst of it has been waves of a strangulation-type sensation and the physiological panic it brings about—racing heart, tight chest, narrowed visual focus, light-headedness, and so forth—all with no actual choking or throat closure.

Even taking the extensive medication regimen my team of physicians has prescribed cannot control the pain. Periods of “relief” (which is never complete…the pain is always at least very distracting and impossible to ignore) are always extremely brief…minutes, maybe hours, but never more than that. Though medications seem to sometimes take the edge off, the side effects can be so severe and make me so sick I find myself questioning if they are worth it.

I have been seen by a significant number of specialists and sub-specialists in the medical community—neurologists, physiatrists, otolaryngologists/head and neck surgeons, neurosurgeons, plastic surgeons, oral surgeons, vascular surgeons, and pain-specialized anesthesiologists, just to name a few. Some have been helpful, and others have been dismissive of what I am going through and unwilling to offer any support. The list of testing and imaging is just as lengthy and has involved CT, multiple MRIs, multiple EMGs including needle EMG of certain muscles in my face and neck, ultrasound, and diagnostic blocks galore. I have spent a lot of time with physical therapists, and I have tried alternative methods such as acupuncture. We have always aggressively persisted, never taking the foot off the gas. The only reason I won’t say that we have tried everything is because we apparently haven’t tried enough things to fix it yet, and we are going to keep trying things until I am better...but we have tried a lot.

Everything up to this point has been worse than anything I could have ever imagined going through. Not in a million years would I have thought that I would find myself where I am today…with debilitating pain, unable to embrace living life to its fullest and pursue the things I’m passionate about. I have desperately wanted my life back for a year, and now find myself in the position where I need it back more than ever.

I remain hopeful as I have found my way to some of the best physicians I have ever met. The path to getting better has already been long but there is still so much more that will need to be done…which is how I find myself on GoFundMe, asking for help. This process has taken a toll on Lucas and me over this past year. I have suffered—a word I do not use lightly—and he has had to watch. We have ourselves financially lost even more than what we seek to crowdfund because of my medical condition. Being the amazing man and partner he is, Lucas would pick up a second job and work 25 hours (yes, I said 25) every day if he could, but the demands of general surgery residency simply make it impossible. As for me, I am unemployable due to severe and unpredictable pain and the extensive limitations it has forced upon me. Though humbling, we have had to acknowledge that we need outside resources to keep at this fight for me to get better.

Ultimately, this is not about asking for money, but rather what money represents. Right now, to us money means:

• Security.

• Safety.

• Peace of mind.

• Freedom from worry and stress.

• Most of all, money represents health…whether it’s the thing that makes it possible, or the thing that stands in the way.

If you can be more generous, please do. You will be saving my life as I had previously known it and hope to know it once again, and you will be changing our lives forever.

If you are thinking “I can only do a small amount and it won’t make a difference and isn’t worth the time”—I want to reassure you that it will make a huge difference to us, especially when added with many others who might feel this same way.

And if you have not a penny to spare, please just share this page with as many people as you can. Actually, if everyone can do this periodically that will make an enormous difference.

Thank you for taking the time to read my story—I know it is a lengthy one. We will forever be so grateful to all who are willing to provide us with support during this time, whether that is by helping us financially or by helping us broaden the reach of this page.

Sincerely,

Grace + Lucas