Lemonade

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.  

Assisted Journey

The Breath

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."

Recharging

No Simple Tasks


It takes more time to do things than it used to. Sometimes I can dress myself normally, just more slowly.  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 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 go?  Will I have the strength to put it away?

No Simple Tasks

Hold Your Breath

Hold Your Breath


I remember reading that if you are scared to fly, you should fly often.  The theory was that eventually you would become accustomed to it, that the nuisance of it would eventually overtake the fear of it and, you would become more obsessed with the boredom than the fear. I didn’t really buy it.  But one day I noticed I was no longer anxiety ridden over the claustrophobia of MRI machines.  I had them so often I was bored of them.  I now find them a nuisance as opposed to anxiety inducing.

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. 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 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

Resilience

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.  

Branches of Pain


There are many emotions that come with getting infusions. There are the pain and discomfort, of course. And the resignation to giving up hours of your day to something you have no idea if it will work. You know you are lucky to have had the treatment suggested and approved. You also know how ill you must be to have made that happen. Doctors do not/cannot dole this stuff out willy nilly. And then there is the devastating expense, $20k - $30k per month, that you do not know how you are going to manage. Lastly, let's not forget the guilt. Not everyone who needs IVIG or subcutaneous IG has access to it. These realities really mess with your mind. You just hope it works.

Branches of Pain

Am I Me?

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?

Inclusion

Independence... if it weren't for disabled parking spaces, I wouldn't be able to do as much on my own. My mobility would be extremely limited.

Elixirs

Waiting. Lots and lots of waiting… and tests… and diagnostic procedures. More waiting.

Everything in My Bag. These are the minimum items I must carry in my bag at all times, which, in total, weigh just under 10 lbs.

Relief

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.”  

All. In. Your. Head.

Slipping Mask

Slipping Mask


Sometimes it is simply too heavy to wear the mask of "I'm okay; look at me being me!"  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 turn to feeling it a nuisance. I'm just not as fun... or easy to do things with anymore.  For some, they seem to think my intelligence and all of my lived experience has lessened in value.  My hard-earned credibility as a valued contributor has shrunk.  That in and of itself makes my life more difficult. It takes a lot more energy when I must first prove my credibility in order to be taken seriously. It is one of the main reasons most of us put so much effort into faking being well.

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, of course, given my shaky, feeble hands would be in too much danger trying to clean them myself. Plus, it just takes too much energy for someone like me. Everything goes into the dishwasher these days. I simply accept the tradeoff.

Fear. Pain, suffering, fear, anxiety, depression, dismissal, hope, determination, gumption, rinse repeat.

Weapons of Battle

Weapons of Battle


A chronic illness is a debilitating condition that is generally incurable and ongoing. It is something that becomes a part of your being. You cannot escape it; you can only hope to lessen its effects. Most chronic diseases do not have definitive tests so determining what you are fighting can be one of the most frustrating challenges. And because we do not have clear definitions of diseases, or precise tests, and certainly few cures... making sense of it can be virtually impossible. It is beyone a struggle. It is a battle. A battle for which you are likely restricted to fight. Your armaments are minimal.

Endless Medical Records


The ongoing trauma event that is chronic disease. The yearning for someone to delve deep into disabling symptoms is often met with the cold steely eyes of modern-day medicine... that godly machine that purports to know all, yet conveniently dismisses much to anxiety or attention seeking, carefully sweeping the unknown under the rug with surgical precision. The poking and prodding more an effort to simply pay homage to a rote decision tree than to be of service... visit after visit after visit, report after report after report.

Endless Medical Records

Sorrow


My friend died.  It hit hard.  I cried so much… for so many reasons, some that I didn’t know were in me and I am not sure how I feel about them.  My friend had a brain tumor and it got gruesome fast so I am definitely weeping sadness for what he went through, but also relief tears that he is now in peace.  Then there are extreme sadness tears for his wife who has been through so much and did so with incredible grace and fortitude. I weep for her and their family.  And even though I didn’t get to talk with him as much since I moved away from the Bay Area, he was someone who always got deep in our conversations… about all sorts of things most people won’t touch, life, death, church, religions, identities.  I miss him.  And I know that should be the extent of it, but I am also jealous of him.  Not what he went through, of course.  I am jealous he is now at peace.  And I know that sounds all sorts of ways.  I wish I could have traded places with him.  He was such a good person with such a full and loving life.  He deserves to be here.  And me, well, I am 18 years into the suffocation of a chronic and debilitating disease.  I weep because I do not have the legal opportunity for doctor assisted death in this country.  I weep for our lack of compassion.  I weep for our arrogance.  I weep for people getting involved in areas they know nothing about.  I weep for myself.

Sorrow

The Lost Days

The Lost Days


I never know from one day to the next if, when I wake up, I will have the strength to function that day or not. I do know that I can better my chances if I remain steadfast in following my detailed routines for eating, pacing my energy, sleeping properly, avoiding triggers, etc. If there is an important event coming up, I know that I must add to this regimen. I must confine myself to bed for several days prior to the important day, being ever diligent in only getting up to use the restroom and grab food/water. I also know that the few days after the event will be crash days… days (sometimes weeks) again confined to bed in order to fully recuperate. Even with all of this, when that important day arrives, there is always the chance that I will not have the strength to get out of bed. True reliability is impossible to guarantee. It is simply out of my hands.  

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.

Manifesting

Fading Memories


My memories are fading.  Some have become distant and vague.  Others feel like they are someone else’s, like something I saw in a movie or on TV. “Did that happen to me?”  I’m not sure.  Others I don’t possess whatsoever at this point.  Occasionally when a friend or family member mentions something in particular from the past, I cannot recollect it at all. “Are you sure I was there?”  Yes. 

Fading Memories

Doctor Visit Preparation

Doctor Visit Preparation


 It is critical that I come extremely prepared and organized to doctor appointments. Doctors barely have 15 minutes with patients in many cases. I have to make the most of that time. I come prepared with two copies of a bullet list of the topics for the visit. One copy is for me; the other is for the doctor. I also bring any pertinent test results and all appropriate research data and any questions I might have. At the end of the day, I own my own health so this needs to be a partnership. Doctors have medical training, yes. I have me. I am a 24-hour-a-day walking research lab and I have access to the hive of multiple Facebook patient groups and also #disabiltytwitter. We are our own clinical trials, and we share. 


I also try to dress in one of two ways. One, as close to a corporate executive as possible or, two, as much of a nerdy researcher type as possible. And I walk the walk. This has made all the difference in the world for me. Sadly, it matters to be taken seriously. Another thing that matters is that I straighten my hair. I don’t always have the strength to dry and straighten my hair so sometimes there is no choice but to leave it to its natural curly state. People have never taken me as seriously with curly hair. I am not as ‘bright’ with curly hair. I am not as ‘professional’ with curly hair. Curly hair is ‘wild.’ Curly hair is ‘fun.’ Going to medical appointments or ending up in the emergency room with curly hair makes my job of getting people to take me seriously even more challenging. It can put my life at risk.

Discarded


File 13 or ‘circular file’ is an old military clerical term (and somewhat humorous way) to refer to the garbage can.  Don’t need that document?  File it in the circular file.  Didn’t like that idea?  File it away in File 13.  Similarly in medicine, there seems to be a bucket for all the cases doctors don’t wish to expend any energy on.  One such bucket is labeled Chronic Fatigue Syndrome (Fibromyalgia gets used this way often, as do others, but CFS is one of the most common).  Have no idea what your patient has and you have no desire to figure it out?  File it under Chronic Fatigue Syndrome. Unfortunately (and sometimes disastrously) that label is linked to another condition… a condition that can be life-threatening.  That condition is Myalgic Encephalomyelitis (something I suffer from).  Myalgic Encephalomyelitis, or M.E. for short, can have a fatigue component, but in my experience, it isn’t actually fatigue that is at issue.  For me it is an extreme weakness.  The word fatigue always sounds like someone who is overly sleepy.  That is not this.  This is like the most severe flu you can imagine kicking your butt so bad you are too weak to get to the bathroom and back. Or, picture those videos of marathon runners you have seen.  The runner gets within feet of the finish line but their whole body turns to jelly.  Their legs turn to spaghetti and they are simply too weak to continue. That is the “spentness” of M.E. and unlike

Discarded

those videos where another runner or runners coming up behind usually lift the fallen runner up and help him or her across the line, doctors do not seem interested in lifting us up.  It is much easier to toss the case into the circular file.  (Just to be clear, medical systems do not actually toss a patient’s physical medical record away; this is a depiction to help us understand the metaphorical File 13).

Missed Opportunities


So many opportunities are what previously gave me life. One of the biggest was travel, especially as a documentary photographer. I have spent time in over 50 countries. That sounds like a lot, I know, but I had planned to spend time in all the rest (there are over 200 countries out there!). The world is an incredibly exciting and inviting place. People are different in the most beautiful ways. World travel always expanded my mind and gave me different perspectives on how things are done and on how to see things. What we might consider normal here may be ludicrous somewhere else. I’ve learned that some things are better done differently. I wouldn’t know that if I hadn’t experienced it firsthand. I miss all of that.   

Missed Opportunities

Catalysts, Triggers, and Activators

Triggers


There are many thngs that can temporarily worsen my condition... I call these temporary dives "flares." At their most mild, they last a few hours and may only cause a migraine. Often, they last a day or two, but sometimes they last weeks or even months. During these flares, my muscles shut down entirely and I must lie down completely flat which means I become bedbound. There are some catalysts that I know for certain will cause a flare. Cigarette smoke is an example. If someone is smoking around me, it can throw me into a flare within minutes. Perfumes and other scented products (chemically scented laundry products are particularly bad) can create a migraine in minutes, if not a full-fledged flare for days or weeks. One year I decided to get my first (and only) flu shot. It caused a flare that bound me to bed for three months. Allergy season can do the same.

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.  

Indiscriminate

Research


Because my conditions are rarely understood by most medical professionals (rarely understood, but not rare), I must do a vast amount of research myself. I have become accustomed to utilizing medical journals and case studies, both online and off, coupled with my own experience and that of my chronically ill sisters, to begin to piece together foundations for my doctors to work from.

Research

Troubling Thoughts

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?

More to come on this project as I continue to work through this developing story...