That’s not to say I don’t still have some challenges. It takes time to recover from these surgeries. After eight months in a cervical collar, I had to build up my neck muscles until they were strong enough to hold the weight of my head throughout the day. Because of my back surgery, it can still be difficult for me to sit in a chair for too long (standing is easier). I still sometimes have stiffness, swelling or pain in my neck or vague, but generally transient, neurological symptoms. All of this is getting milder and less frequent with time, physical therapy, and strength training.

I am also deconditioned. I still don’t have the endurance of an average person. For seven years, I was mostly in beds and wheelchairs, and was completely flat and on a catheter (not even transitioning to a commode) for a good part of my eight week hospital stay. It’s going to take time to recondition both my muscles and my peripheral nervous system. When I exert myself, I do get fatigued, and will often drop hard by the end of the day, but it’s an entirely different thing from when I had ME.

Before my surgery, I would never have been able to exercise. Any activity beyond my extremely circumscribed limits would make me feel worse, perhaps permanently, causing a “crash” of my autonomic, central and peripheral nervous systems. Now, for the first time in eight years, I can feel the healthy fatigue of a day well spent. Every day, I try to push myself a little harder. The next day, I wake up sore and stiff, like I’ve just run a marathon. I can feel the lactic acid in my muscles, and sometimes my brain. At the beginning, I’d wonder if my PEM had come back, but then if I got up and started moving, the pain, stiffness and lactic acid would dissipate. Whereas before my surgeries, movement always made me worse, now it actually helps me feel better. The more physical activity I do, the stronger I get. Up is up again.

I do still have mast cell activation syndrome for which I take Ketotifen, but even that seems like it is improving and may eventually go away. In the last many weeks, I seem to be becoming less and less reactive to mold and my other mast cell triggers.

The other reason why this post is hard to write is I don’t feel about this miracle at all the way I thought I would. Part of it is that recovery is a process. While I found immediate benefit from the surgeries, it wasn’t like I woke up, the skies parted, and suddenly I was an average human again. My surgeon told me 50% of my outcome had just happened in his operating room and 50% would be the work I put in over the next twelve months, and every week I learn why that is truer than I could have known. I also feel like I’ve just come back from a war, and it’s left scars I didn’t know were there. This experience has changed me forever, in good ways and in hard ways. Now that I finally have the space and health to truly feel what any normal human might feel about the last eight years, I sometimes wish I didn’t. The grief and trauma over what this illness has destroyed has come rushing in, for me and for Omar; the meaning of the time that we will never get back. We are so lucky to have this new chance, and we know there are so many who have had to live through much worse for far longer, but we just don’t feel lucky yet. My husband slept on an airbed in a hospital room for nearly three months, through many nights of me waking up in excruciating pain, all while trying to keep working and keep our world together. Right now, we just feel exhausted.

I also can’t help but look at everything that’s happened to me and feel even angrier about the conversion disorder diagnosis I received in 2012 (made on the basis of my tethered cord symptoms). Angry how unlikely it was in this medical system that, even if I had lived another fifty years, I would ever have found out what was causing my symptoms.

I also can’t help but feel something approaching survivor’s guilt. Why did I get this lucky? How do we make sure everyone who needs these surgeries has the choice to have them? How can we uncover all the causes and all the cures for all the mechanisms that might underlie different patients’ ME?

On that point, I want my story to be a source of hope. I did not get better by thinking positively or drinking green juice (even though I’m sure both are good for almost everybody). I found the specific cause of my symptoms, backed by both subjective and objective measurement. I then had three fairly long and complex neurosurgeries to address this cause, and am now on a path to recovery.

This was possible because surgeons have been doing craniocervical fusions on patients for more than fifty years. At first, the surgery was for patients who had had acute traumatic accidents. Later, it was used for craniocervical instability due to tuberculosis, to people born with congenital risk factors for developing CCI, like Little People and people with Downs Syndrome, and craniocervical instability due to inflammatory conditions like Rheumatoid Arthritis.

More recently, craniocervical fusion surgeries are being used to treat patients with craniocervical instability due to genetic connective tissue disorders, especially hypermobile Ehlers-Danlos Syndrome. And now, Jeff Wood and I are the first two patients (as far as we know) to meet the International Consensus Criteria for ME and to have our ME resolve due to this fusion surgery. (At least 20 patients with ICC-ME who are part of the online community have been diagnosed with CCI in the last year.)

Measurements, techniques, and treatments developed in one scientific or medical context can often be applied to people living with other diseases. While for decades, people with ME have been frozen in amber due to gross neglect from the medical community and government agencies, all around us, science and medicine have continued to advance. While that should be a source of pain and anger, it should also be a source of hope. Whatever the cause or central mechanism of your ME, there is a reasonable chance that when it is discovered, a treatment may already exist, waiting to be applied to a population it never imagined could need it. That discovery could come from a clinician or researcher. It could also come from an unusually dogged and creative patient, like Jeff, like you.

Whatever those treatments turn out to be, I know we will have to fight for them. Fight to scientifically validate them. Fight to educate doctors about them. Fight to ensure that everyone, no matter their country, health system, or financial means, has access to diagnosis and effective care. I still have a long way to go in my recovery but no matter how well I get, I will never stop fighting for that future.