The Story... life with chronic disease
This is a project I have wanted to do for a very long time. I would like it to serve as a love letter to the chronic illness community… especially the women who are most gaslighted by medical professionals and others in our communities at large. This is a photographic fine art series with careful attention to raising women up in the process. You see, I, myself, have a life-threatening illness. It is called Myasthenia Gravis and it has thrown me into the deep end of what life is like for women with disabilities/chronic disease.
Assisted Journey
Our culture has very strong ideas on how I should look, how I should behave, what I should do about my health… if I should exist at all. For the most part, I have been discarded. No longer do any of my accomplishments matter. It is as though I never existed and that any and all education and knowledge and lived experience has disappeared. My agency has been taken from me, worse if I do not “look” the part… well enough to make those around me comfortable, but not too well as to look like I am taking advantage of some perceived systemic benefit. People often expect me to look downtrodden and one step from homelessness. Sometimes I do (and many with chronic illnesses are), but usually I do not (as many of us are not). Chronic disease can happen to anyone at any time.
The Breath
I would like to show that there is still beauty here, and power, and fight. That I have much yet to offer. Yes, there are challenges and there are truly gruesome moments… and I will share some of that as well… but I will mostly shine a spotlight on the resilience and fighting spirit and BEAUTY that still lives within me. I strive to make lemonade out of lemons each and every day.
Recharging
Unlike the average person, I don't have much battery power to start with, and recharging what little I have takes a tremendous amount of discipline. As my friend, Athena Cooper, explains it, "Think of your body like a car. Some people have enormous gas tanks, so it seems like they can keep going forever. Other folks - like you and me - have little gas tanks. We run out of fuel quicker, but that's okay. It's just the type of car we happen to be. And if your car runs out of gas, you don't get mad at the car. You just go to the gas station and fill up the tank... as often as you need to."
Resilience
Osteoporosis can be very common with many auto-immune and neuromuscular diseases, even the medications themselves can cause it. Because of mine (and a faulty floor) I broke my back in July, 2021. It was my lower back and it caused problems with nerves responsible for various bodily functions along with shooting pains down my legs.
When various orthopedic surgeons looked at my scans, they dismissed the new findings… Tarlov Cysts. And even though there was nothing else to explain my symptoms, they assured me that Tarlov Cysts are not really a thing, they do nothing. I saw three of the best orthopedic surgeons in Southern California, all of whom dismissed me and my data.
Then I met other men and women with the same functional issues and similar Tarlov Cysts. They shared with me the names of the few orthopedic surgeons in the country with advanced knowledge of these cysts along with the surgical skills to address them. Unfortunately, these specialists were not local to me so I went back to my three previous specialists with much greater data. One of them laughed at me and suggested I was spending too much time on Dr. Google. One of them became very defensive and condescending and told me I did not know what I was talking about. And the third one actually admitted that he had seen some decent research but he thought the surgery was not worth the risk (when I asked him why he did not share that with me the first time, he simply stated that Tarlov Cysts are not something he wants to deal with).
Well, I made an appointment with one of the nonlocal Tarlov Cysts orthopedic surgeons. He looked at my scans, asked me a lot of questions, allowed me to ask a lot of questions, and we scheduled surgery. I had surgery on December 22, 2022 and all of my functional and pain issues were resolved. I spent one and a half years trying to get resolution to some very serious functional issues, not to mention the pain, all of which are known to be progressive.
I am glad I did not give up and I feel terrible for those who are convinced to. I cannot even count the number of times doctors have made a point to dismiss things instead of simply admitting they do not know.
No Simple Tasks
It takes so much more time for me to do things than it used to. Sometimes I can dress myself normally, just much more slowly. And other times, I need aids which take a lot of time to use. There are so many hidden things that I can either no longer do, or that take five times longer to accomplish. Brushing my teeth can often take stages, and often I must sit. It is very hard to spit into a sink when sitting. Should I get a basin? Where will that reside? Will I have the strength to put it away? Time, time, time.
Am I Me?
Am I still in there? Who am I without my full-time job? Who am I without my athletic pursuits? Or being able to say ‘yes’ to invitations from friends? Or spur of the moment adventures? Am I still in there?
Tuesdays... the day each week where I stick six needles into my stomach to infuse a pool of immunoglobulins (antibodies) from the plasma of thousands of healthy donors.
Bedazzle
It's. All. In. Your. Head.
Gaslighting… the medical community can sometimes be the worst example of this. They often want to push me aside because they do not have the knowledge or the tools to know how to help me. It is easier to claim it is all in my head than it is to admit they just don’t know. The other classic discard move is to blame things on weight. “You just need to lose weight.” One doctor hadn’t even looked up from my chart while he recommended that I simply needed to lose weight. Boy, was he startled when he looked up (wondering why I hadn’t responded). I was down to a very gaunt 108 lbs on this 5’7” frame at the time. “Hmmm” I said. “I guess that’s not it.”
Fear
Pain, suffering, fear, anxiety, depression, dismissal, hope, determination, gumption, rinse repeat.
Slipping Mask
Sometimes it is just too heavy to wear the mask of "I'm okay; look at me having fun!" The mask is slipping more and more these days. It's getting harder and harder to keep it in place. People start to treat me differently after they've known about my condition awhile. They get bored of it. For some, the concern and empathy turns to feeling it a nuisance.
I'm just not as fun... or easy to do things with anymore.
Gratitude Along the Way
This was me right after I broke my back. It was horribly painful, not only the break itself, but the back brace caused all sorts of chafing and sores as well. I literally had to pad my chest to buffer the upper bar. But recently I got to wear that same exact outfit to an art opening which included some of my work. AND I DIDN'T HAVE TO WEAR THE BRACE!
Buffer
Relief
Manifesting...
A vision board, a shrine of endless medications and symbols of hope... willing to give everything a chance, including patience with endless advice and recommendations from those who claim to have solutions. Have you tried yoga? Have you tried essential oils? You should start each day with a huge glass of juiced organic celery... warm water with lemon... intermittent fasting... the list goes on.
Tradeoffs
One of my dearest friends, who happens to be a professional chef, about cried when she saw that I put my cooking knives in the dishwasher. She quickly understood given my shaky, feeble hands would be in too much danger trying to clean them myself, of course. Plus, it just takes too much energy for someone like me. Everything goes into the dishwasher these days. I simply accept the tradeoff.
Elixirs
Who says your hydration practices need to be mundane? You can always find me stocked to the hilts with Ensure and Pedialyte and DripDrop… and a little sparkle and zest!
Indiscriminate
Many people pretend that what has happened to me could never happen to them, either because they do things differently or because they are ‘blessed’ or because they simply would never allow it. The truth, though, is that chronic illness is indiscriminate for the most part. Take a look at all the athletes now existing with Long Covid. I, myself, had spent an entire day on a grueling hike in Marin with my sister two days before I became ill. I was regularly riding centuries on my bicycle and running a minimum of 6 miles a day… AS WARMUP. Yes, I was athletic when this hit. Yes, this can happen to anyone.
Troubling Thoughts
One of the more relatable posts I have seen on social media. “Every night I go to bed, I pray very hard that I should not wake up in the morning. So far, I’ve not been successful. I woke up today. Again.”
It is not that I am suicidal. Far from it. I am logical, data-driven, actually. There simply is only so much one body can take. I have been battling this disease for over 15 years, seeing all the best specialists, working with all the best healers. I have been diligent in my research, compliant in any and all treatments given, and steady with my hope. At this point my medical partners and I are throwing anything and everything at the wall just to see what, if anything, will stick.
Living with this condition is like being trapped in the rubble of an earthquake and the only thing free is your face. And there is no one coming to save you. You simply reside in pain and suffering. It doesn’t matter if you muster up the effort to put a smile on your face. When, for the sake of mercy, does one call it a day?
