Tessa's Medical Expense Fund

My Dear Friends,

When Christmas is over, and the last of the presents are unwrapped, and the neighbors cajoled into accepting the remaining cookies, something very powerful comes over me: New Years Mania. That undeniable desire to make myself and my life better (and preferably before January 1st!). I've always been deeply invested in New Year's resolutions. A clear-cut opportunity to change for the better? An opportunity to write lists of things that can lead to improvement (or, frankly, just the writing of any list!)? A chance to definitively close-that-door, end-all-that-crap, throw-it-out-recycle-it-or-give-it-away? A golden opportunity for psychological re-set, re-start, re-birth, forgive-and-be-forgiven? YES. PLEASE. 

I have 30 years worth of New Year's resolution lists, and habit-tracker calendars, and New Year journals, and organizational apps, and scores of self-help books focused on helping people change. Re-reading these Tributes to a Better Future Me are a reminder for how doggedly I pursued self-improvement, how much energy and time I poured into moving that needle by even 1%, how I literally *enjoyed* doing the work associated with change.

But what stands out to me more than anything else is Past Tessa's overwhelming sense of AGENCY. For her, there was simply no question as to her ability to alter herself or her life. How easily she committed to what could be considered momentous change! How lofty some of the goals were and how dauntlessly she pursued them! She'd never encountered anything that commitment, hard work, and self-belief couldn't subdue. Resilient. And at New Years in particular, full of HOPE. 

I am in awe of that Past Tessa. I envy her (and her naivete) so much. As I sit here, swirling the dregs of 2024 in my mind, I find the Now Tessa is approaching New Years in quite a different mindset. There are no lists (if you write a list, and cross nothing off of it, it sits there, taunting one with the reminder that one is accomplishing nothing and going nowhere). There are no habit-tracker calendars (what the heck would I write? "Feed yourself"? "Cut your toenails"?! Mundane tasks (even IF they are vital to survival and require a considerable percentage of one's energy) aren't suuuuper fun to track). There are no journals (lordy, I'm exhausted just looking at the cover of my journal...) or self-help books (Wait, what was that paragraph about? Let me read it a second time. Hold on, I'm lost. Maybe a third time? Oh heck. Forget it.). 

The only desired change that matters is quite easily summed up in two words: 

GET HEALTHY. 

But when that's *been* the resolution for years. And you've already done all the big things that are supposed to lead to meaningful healing. And then you've done the little things too. And then the microscopic things. When you've spent *tens of thousands* of extremely-kindly-donated dollars on doctors, and tests, and IV's, and supplements, and experimental therapies, and you *still* can't stay awake for longer than 3 hours without caffeination. When the number of things left on the list of, "maybe this will cure you" is dwindling to nubbins. When writing something like this takes every ounce of mental acuity (and 4 cups of coffee), followed by doing nothing for days in recovery. 

Just what, exactly, should the New Year's Resolution be? 

When one's world keeps getting smaller, and the future keeps getting darker, there is really only one path for salvation: be here, right now.  

Get outside. Every day. Look at the world around you. Hone in on one particular thing and really look at it. Name it, describe it, experience it. The seeds of joy can be found in the most ridiculously normal things! Look at that perfect shoe print in the freshly-fallen snow. Feel the ice crystals forming inside your nose in the pre-dawn, winter air. Smell the bacon being cooked by the pound at the diner around the corner. 

Tell someone you love them. Share an experience that made you laugh. Lament over a shared tragedy. Ask for photos of happy small people (aka childrens) or pets. Connecting with other humans (even if it's simply a text) is vital to feeling that life is meaningful. Yes, it takes energy (sometimes more energy than one actually has). But once a day. With someone. Connect. 

Talk to your stuffed animals. I'm serious, lol. They are just as "real" a connection sometimes as living creatures. Historically, my joy-pot has been filled by helping others. I don't have the energy for that. But I can tuck Tipsie Tiger into a blanket so that he stays warm. I can give Marvin the Moose an antler massage. I can make sure Baby Raven has a good view of the Celtics game on the laptop (he's VERY fond of basketball!). This isn't a sign of senility--it's a way to "make a difference", even if only on a psychological level. It's a way to LOVE. And if there's anything we know about human survival, it's that loving another can literally make the difference between choosing to keep living and choosing to die. 

That's it. I can't 'bullet-point' my way out of the brain-fog. I can't 'track' my hands into no longer tingling or being numb. I can't 'plan' my way into returning to working, or dancing, or reading, or calling friends on the phone, or any of the other things I desperately miss about my former life. I'm not saying I'm giving up on having them again. No, that's not it. But I can't focus on their unattainableness. That only leads to desperation and despair. 

So if you, like me, are all about turning over new leaves on December 31st. If you, like me, are limited in what you can accomplish/change/produce. Remember that being IS doing and that that can be enough. Remember to get outside, and smile hello at someone you pass on the street, and then come home and make "tea" for yourself and your stuffed rockhopper penguin. Perhaps 2025 will be just a weeeeee-bit different than 2024. Just maybe.

: ) 

Dearest Friends,

I hope you are all well and enjoying summer. To think we're almost into fall?! My, how time soars. It's been awhile since I connected with you about my health journey. 

I wish I had better news to share. Instead, the valley of illness only seems to be deepening, the mountain of recovery growing steadily out of reach. After a year in treatment for Lyme disease (with minor focus on mold poisoning and two other tickborne illnesses), I have failed to make any significant progress. The only blip of headway has come from experimental Helminth Therapy (where one consumes a mutualist parasite that helps to boost the immune system). At this point, I'm faced with the reality that Lyme may not be the primary driver of my symptoms. So with the help of a new team of doctors at the Ultra Wellness Center, I'm embarking on a new, more intensive round of testing with the intention of discovering the underlying source of my ongoing issues. 

It is hard enough to remain so sick after so much time and effort invested in treatment. It's a whole new ballgame to feel I'm back at the beginning again, not knowing what's wrong, and as of yet unable to do anything about it. I try to tell myself that this past year hasn't been a failure, that we have been doing our best throughout the process and will continue to do so, that complicated cases like mine are littered with trials and "course-corrections" that ultimately lead to progress. But it's hard. Hard not to feel that this search for answers is hopeless. That I am simply doomed to be an invalid the rest of my life. 

To make matters worse, the Social Security Disability department, designed to support disabled people like myself financially, is so understaffed that the processing time for applications is over a year long. I am unlikely to see any relief until at least December 2024 (and possibly longer). Which leaves me relying on the generosity of family and friends, and incurring an ever-greater mountain of debt. When just an Elispot Lyme test alone costs $1,750, you can imagine how terrifying it is to be faced with the need to re-open the field for further diagnostic testing. And yet there is no other way forward. My hope is that a fresh collection of eyes, headed by Dr. George Papanicolaou, will be able to put the puzzle pieces together and give me a new, more productive direction for treatment. 

In the meantime, I remain debilitated by fatigue and brain fog, the shell of my former, vibrant self. To those of you who have continued to reach out, offering solace, meals, or offers of visits, I thank you; please know that they touch my heart and lift me up, even when I don't feel well enough to accept them. For those of you who are in a position to contribute to my medical bills, you can donate here in this GoFundMe (and I thank each and every one of you who has done so in the past).

I am not giving up (at least, not yet). My love for all of you is everlasting, even when I don't have the strength to write. I do love to hear how you are doing and what's happening in your lives (just please be patient with any response).

Love & Health to All,

Tessa

Dearest Friends,

Oh, how I miss you all! I hope you are enjoying the holidays, eating all sorts of delicious things, and dancing, dancing, dancing! A particular thank you to those of you who check in to see how I'm doing. I am touched every time.

I'm afraid things continue to go badly here. Despite our best efforts, the infections continue to ravage my system. My immune system continues to decrease in function and now my organs (liver in particular) appear to be struggling to handle the onslaught. My doctors remain hopeful and continue to push forward with different treatments. But I admit, it is hard to stay positive.

So if you have a moment, please send positive, healing, hope-filled energy my way? And for those kind souls who have the impulse to help, the most helpful thing is to contribute to my medical and living expense fund. But I LOVE to see photographs of you (or your pets) being joyful! Please feel free to post them to my Facebook wall or send them in a message.

Bless you and may your holidays be filled with joy!

Tessa

My Dear Friends,

Thank you again for all the support you've offered me during this terrible time. It is only because of your generosity this past spring that I have been able to afford my medical care and keep the bills paid. Without it, I don't know where I would be now. 

It all seemed so simple: find the doctor, find the diagnoses, start the treatment, GET BETTER. But life doesn't work that way. It is far murkier, the path far, far longer, and the "better" ever out of grasp. My plans for returning to independence, to working and paying for my life myself, continue to move equally out of reach. And gaining support from the State is requiring a lawyer and goodness knows how many months of time, with no guarantee of success. 

If asking for help once was hard, asking for it a second time is torture. I am rubbed raw by it. That others should sacrifice for me when I have already received so much feels crushingly wrong. 

It feels that to ask for your help requires acceptance of an unacceptable circumstance: "I am still too sick to work and may be for an unforeseeable time."  

It requires humility, "I cannot help myself right now. I continue to need others in a way that makes me deeply uncomfortable. "

And it requires faith. "I am worthy of support. I have friends able to offer that support without harming themselves. Asking for help and receiving it do not make me greedy or selfish. I am not less of a person because I cannot help myself through this trial. I can recover and when I do, I will be able to help others as I have been helped."  

Author Rumor Godden, in her novel Take Three Tenses said, "Things are serious just now...You have to treat them seriously, but it is of no use to be afraid. I should be afraid if it made us any safer, but it doesn't. You have to think... that anything we do in any time, the smallest thing, like ordering the paper to come every day, or promising to go out to dinner next Wednesday week, or getting a new tube of toothpaste, particularly the large size that lasts twice as long, is an act of faith. It is an act of faith to think or hope or plan, but I intend to go on doing it." 

It is so tempting to live in fear. To let planning fall away and wrap myself in darkness instead. But that doesn't work. Only faith will work. And today, my act of faith is to ask for your help. Please help me continue to receive treatment and pay the rent. 

Yours truly,

Tessa

Dear Friends,

I am really sick. Despite incredible efforts by my doctors, specialists, and medically-knowledgeable friends, we still do not have a diagnosis, nor a treatment plan for what increasingly seems to be a complex condition. Debilitating fatigue, brain-fog, and inflammation have taken hold and refuse to yield. I have spent the last six weeks on bed-rest without signs of improvement.

Life is full of adversity. I've always met such storms head-on, fiercely working my way towards resolutions, knowing that if I just put in enough effort--if I just worked hard enough--I'd manage to steer my boat to safe waters. This attitude and work-ethic got me far; it also may even have been the seed for my current health issues. For the first time in my life, simply trying to push through and work harder is not helping. The harder I try, the sicker I get.

I am a proud, single woman. I've supported and educated myself and grown a thriving small business. I like to do things for myself. I don't like to ask for help. I've spent the past six weeks doing all I can to avoid asking for help. As the extraordinary bills for specialist office visits and lab work continuously roll in, my "rainy-month-fund" (which felt so sufficient in theory) has been drained and the stress of supporting myself has become immense. Without any remedy on the horizon, I find myself leaning less and less towards hope and more towards despair.

So I'm asking for help. I cannot steer this ship through these waters alone. Please, help me stay on top of my medical expenses. Please help me continue to pursue seeing the specialists that may have answers. I know that life is hard for us all right now. If you cannot give financially, please send positive, healing energy towards Boston?

I miss dancing with you. I miss connecting with you. I want to recover enough to make these things possible again.

Thank you. Thank you. Thank you.