It was in the Spring of 1997, almost two decades ago, when doctors first told my parents they thought I had a tumor on my spine. However, after further testing, I remember receiving the news with my two parents and sweet Grandma June, that the pain I had been experiencing was not a tumor but in fact a fracture of three vertebrae that had already begun to re-heal on it’s own, causing the imaging to look askew. Awkward, freshly turned 13-year old girl that I was, was fitted for a body brace, instructed to only take it off for showers, assigned many, many months of physical therapy, and was told my back would never be the same.
Fast-forward almost twenty years and I suppose that doctor’s appointment was perhaps the most foreshadowing tale of my entire life. Things certainly would never be the same and I would never return to a life without marked physical pain and the emotional hurt that coincides from being chronically ill and the stigmas that our society places on people like myself. If you know me you know that the next years were filled with eating disorders, depression, and kidney surgeries of more than a baker’s dozen. It was a joke between my parent’s and I that the orderlies at my neighborhood hospital, who would wheel me up to the OR, knew me and recognized me. Turns out it was more than a laugh or a joke to get us through or standard pre-surgical jitters---His name was Miguel, he always smelled freshly shaven, I never knew if he was bald or had hair underneath his surgical paper cap, and his shaved arms, filled with tattoos, glistened under the neon glow of those hospital lights. On the off chance that we would get someone else instead, we always asked where he was or if he was still around, as if we needed to make sure he was okay. And sure enough when I left to go to college only to return at break for another surgery and the next year to take a year off for health reasons, he too had worried that I had moved or hoped that perhaps I landed on the other side.
Unfortunately, the other side to this tale is a battle that we lost. The surgeries, the treatments, the prescriptions, the specialists---they consumed me. A disease that even when taken out at its knees will find a way back to suffocate you once more. My endometriosis has done irreparable damage to not only my body but also my soul. After 3 rounds of medically induced menopause, I4 surgeries, infertility specialists, parents who to their demise were left empty handed, and the most supportive husband in the world, 538 days ago I had a total hysterectomy and in 3 hours my body managed to age 3 decades. There is nothing in the world like it. What we thought would help lead my body to restoration sent my body into a further path of destruction and revulsion- marking the time between the day I woke up as a barren woman and present day the hardest span of physical and emotional obstacles that I have ever encountered.
For years I have experienced a wide spread of symptoms throughout my entire body. From as far reaching as one day over eight years ago waking up with an uncontrollable and debilitating headache that still to this day has never gone away to spontaneous vomiting after eating without warning, to feet too swollen to walk on, to pain so significant in my back and shoulder that all I can do is lay down and pray out to God that He would take it away. I could go on and on for hours but that is not the point. The point is, the pain, the sickness, it is everywhere. We have had every blood test, every homeopathic, every diet, acupuncture, voodoo, you-name-it-I-have-tried-it, sort of thing done.
Blood tests will often show that my body is high in white blood cells and is fighting an infection but they won’t know where. Studies will show autoimmune markers at play but not anything easy to diagnose. Brain MRI’s will show disturbing patterns but nothing “textbook.” As time has gone on my body has no longer been able to sleep or eat without having an allergic reaction. And while my hands are in too much pain to open jars or do ordinary tasks and I’m unable to walk on my feet, while my body is rejecting food and the headache constantly pounds in my head, and the searing muscles contract throughout my entire body, I have become a different person. Not different in heart or spirit but different in what I can offer; that’s for certain.
In Chronic Illness there is a theory called the “Spoon Theory.” The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished. One of the tenets of the spoon theory is that many people with disabilities or chronic illness must carefully plan their daily activities to conserve their spoons, while most people without any disabilities or chronic illnesses don't need to worry about running out. Because healthy people do not feel the impact of spending spoons for mundane tasks such as bathing and getting dressed, they may not realize the amount of energy expended by chronically ill or disabled people just to get through the day.
With that theory in mind, some people may think I have changed, when in reality, I must just use my spoons wisely.
One week from today, I will have been married to my Saint Nate for 6 years. It will be a total of 2,190 days that we have spent together as man and wife. 10 days ago we were given a diagnosis- Ehlers Danlos Syndrome (EDS) and it was one we definitely weren’t hoping for. There is no easy treatment or cure, no prescription or easy one size fits all treatment plans, which is what I had been praying for. Instead, a lifelong debilitating illness that will only further progress as time moves on, causing my body to wreak more havoc on itself and cause me more debilitating pain.
Essentially, EDS is a connective tissue disease. The Protein Collagen is the main structural component of the body and it is used in all 12 systems of the body meaning that this syndrome has comorbidities with every organ, joint, and muscle. So far, we’ve discovered that my bone density has dropped 50%, my thyroid is functioning below normal as well as my adrenal and pituitary glands, both arches in my feet have completely collapsed, I have another fracture in my lumbar spine as well as a herniated disc and several cervical herniated discs, my feet are subluxating out of my ankle joint every time I walk, I have dysautonomia which will need to be tested for a more serious condition called POTs, I have gastropareisis ( a motility disorder w/ malnutrition) and eosilophic esophagitis (both GI disorders that are hard to manage and often don’t occur together so managing them simultaneously will be/has been very challenging, pelvic floor instability, severe chest pain, Raynaud’s, worn away jaw joint, insomnia, scoliosis, osteoarthritis, CRPS, neuropathy, migraines, allergies and mass cell formation, and severe chronic neck, back, hip, hand, and foot pain. There’s a website that clearly discusses all of this is depth if you are interested. I also have many more resources but it’s very overwhelming and I’m shocked if you’d made it thus far.
It is said that Ehlers Danlos is the true invisible disorder. Our bodies are built this way for some reason and in order to strengthen them it takes twice the length of work it would a normal person, the work cannot be rushed and must be stretched out over a long period of time, and we must exert much more than twice the effort. With this in mind, I’ll probably never be a body builder. I think part of what exacerbated this for me and made me fall down the rabbit’s hole (although it makes sense that I have had this forever) is that after my hysterectomy I had to come off of hormones for about 18 months and I lost all muscle in my body. With a few weeks time my body turned to mush, which I believe probably only hurt me even though my symptoms and comorbid conditions have been going on for some time.
This weekend my cousin graduated #1 in his class of 250 from Medical School from Tulane in New Orleans. It is said that in medical school they teach that, “if you hear hooves look for horses.” Essentially, don’t go chasing down something that isn’t there. However, with EDS our ribbon, our symbol is a zebra. You might hear hooves and they might be rare, but zebras do exist. And just like every zebra’s stripes and pattern is different- so is every patient with EDS.
I’m proud of my cousin and his achievement this weekend but I will tell you that I ache. That we ache. Again we mourn for a life that we imagined. It was always still in our hopes and thoughts, “When you get better…” and while things may become more manageable, “better” isn’t my anthem (I'll tell you what my current anthem is tomorrow). I never dreamed of this life. I never wanted this life. I wouldn’t pass it off to anyone else if I could. It is ugly, hard, messy, painful, often times unbearable, and yet beautifully mine. It is ours. God gave Nate and I the chance to see life like most people never will. He is letting us practice love, a depth of love and service and real sweat through your t-shirt commitment to each other that some marriages may never know.
Yet, it is lonely and tiresome and we wonder. About a lot of things. Like if we will always need to eat cereal and pb&j for breakfast, lunch, and dinner or if we will ever get that proud title of mom and dad. We are sending this update to you so you can know where we are. We are asking you to pray. To pray for health, to pray for a future that wildly exceeds the one we currently curse. We ask that you pray for provisions and that in some miraculous way that we would be taken care of and cared for (financially and practically). There are many things that we need and would be useful and we trust that God sees us in our need. We also ask that He would bring us into a deeper community with people who genuinely love us and that the two of us will grow richer in love with our Lord and each other. Thank you for reading this and for being in our life and our journey.
A Half a Dozen and Still in the Fight,