When there is no treatment.

It is a beautiful day today outside. I want to be out there doing yard work and enthusiastically welcoming the approach of spring, but I’m too tired to do anything other than enjoy the view. My physical fatigue that ebbs and flows has combined with my mental exhaustion and I’ve check out.

I deleted Instagram and Twitter from my phone – limiting myself to Facebook for groups I like to keep up with and email. I’m not returning calls. I’m not talking to family. I need quiet. When I have energy (seems to be 2-3 days on 3-7 days off) I’m in the garden. I’m breathing and thinking and considering and feeling the cool earth with my fingers.

All the many doctor appointments and testing over the last few months have finally yielded diagnoses. I expected to receive them with vindication (take that doctors who tell me nothing is wrong!) and a sense of purpose. Instead, I just feel flat.

I’ve been chronically ill/disabled since I was 24 years old. I’ve had time to get used to those diagnoses and understand what life is like with them. My expectations on how I would feel when the medical professionals finally figured out what was wrong with me now, was not on point.

I’m still processing and trying to figure out how to live with this new future. I’m not sharing conditions until I understand them well enough to discuss them, or maybe I never will. Here is what I am comfortable saying: It’s genetic. I have two genetic diseases for which there is no treatment or cure. They’ve likely been the cause my other health problems. They will get worse. I do not know how quickly. The only treatment will be for the pain as it worsens.

To that end, I’m grateful for the diagnoses. Without them, I would be denied pain treatments I will need in the future. However, I did not get the diagnoses I expected. I was looking at multiple overlapping conditions that all had multiple treatment options. I didn’t expect to hear there was a cure for whatever ailed me, but it never occurred to me that they’d tell me there were no treatments available.

I’ve a lot of life left and many things I’ve yet to do, but the last two years have impacted my health desperately. 2019 had the heart issues that led to the stopping of my running, and 2020 post heart surgery recovery immediately turned into Covid isolation due to severe high risk. The isolation has led to me living a mostly sedentary life and becoming deconditioned. The road post-Covid vaccination to recovery is going to be long. This is made more difficult by the development of what appears to be permanent damage to my vestibular system and ability to balance.

I’m overall just checking out, because when I look at the length of the road to recovery I’m overwhelmed. I don’t know if I can get to where I was 2 years ago – training to run a half marathon. I don’t even know if that is important anymore.

What I worry about the most is money – I am saving as much money as I can, because money is the number one determinant of quality of life and medical care received, but at my rate of income, there will never be enough. I see myself caught up in this hurricane of there never being enough money to not worry about medical needs, and praying for some sort of better health care system to come through, while doing all I can to keep my cost of living as low as possible, so I can sustain life on my SSDI of less than $1k a month, and whatever I can earn through side jobs when I am able.

I get lost in the hurricane, and then for a moment: I am in the eye of the storm and in the calm comes the certainty that I can’t fix it. There will never be enough money. There is no job I can do that will give me a living wage on what little work I am capable of doing. I have no control over what amount social security pays out. All of it is out of my control. There is peace in that hurricane eye. I see, for a moment, that none of it really matters. That my energy is wasted there. There is no such thing as security.

The half marathon is important. The gardening is important. Playing with my dogs is important. Seeing my niece and nephew grow is important. Relationships with friends are important. These are the things I can choose to put my limited energy in once it is safe to do so. I’ve lost too much of my life to worry and fretting over things out of my control.

Inevitably, I’m sucked back into the hurricane and into the whirling rumination of how to make money go further, do more, how to find a new project that will surely bear financial fruit THIS TIME, and use all of my energy towards that while neglecting the things of life that are important and provide joy. I’m desperate to prove to myself and others that I really tried my best. I did everything. I didn’t give up.

I do believe that it’s a very American thing to see work, money, and productivity as the end all be all. “Productive member of society,” is an incredibly damaging phrase to those of us with disabilities and chronic illness. There is a constant struggle to prove to people: family, friends, governmental programs, and doctors that you are worthy and have value when you can no longer put in hours at a job.

I can tell you that I battle with myself constantly, through internalized ableism, to show I am worthy. I post on social media when I work with the local food distribution. And yes, part of it is to show what is available, because oftentimes people do not know how to help or where to get help, but a large part of it is saying: “Me! ME! Productive, worthy, and deserving.” I tag and post when I donate to local charities. “ME! Look! You showed me kindness in the past, you helped me, I’m a good person, and I’m passing that kindness and generosity forward. You can feel good about what you did, I was worthy of your gifts.”

This is something that I have to work on internally, because it’s only going to become more of an issue as time moves on and my condition advances, but it’s also something that is deeply impacted by society – its valuing work and productivity over individual health and wellness – and judgement of worthiness and hierarchy in disability. That is the work YOU can do. Believe disabled and chronically ill people. Even those who squeak loudly. Who talk of nothing else. One often does so when one does not feel heard. Please, hear them. See them. In doing so: see me.

In the recent weeks I see the many things I do that are not valued in society. The caregiving support for family members and the emotional support for friends. The gifts of kind words to acquaintances and even answering written letters and emails through this website. Seeing so many of you and your trauma. The financial labor I do on behalf of friends and family to help them improve their lives. The Buy Nothing group I work with so extensively to promote community. Everyone around me is impacted by my various forms of labor. This is something I need to remember. I have a job – a number of jobs, really -that I do in my community and sphere of influence. Just because the value doesn’t tally at the bottom of a paycheck doesn’t mean it doesn’t exist.

What comes next? I do not know. Suddenly, writing successful blogs, or making viral videos has lost a lot of its appeal. I will always need money, there will never be enough until there is universal health care, but I’m tired of using all my energy to fight for scraps while my life flies by. I’m here. I’m not going anywhere, but my time will only go to what excites me.

Take care friends. Future certainty is an illusion that can be shattered in any moment. Tomorrow is unlikely to look how you think it will, and no amount of preparation can prepare for everything, and even the largest of sacrifices may not be enough. Make a reasonable financial plan. Do what you can and then let the rest go.

I’ll be in my garden tomorrow, counting down my days until vaccination and the future vacation I’ve promised myself and the dogs. We’ll be walking the beaches of Seaside and resetting our hearts to the crashing of the waves. It will be worth every item I chose not to buy, and every opportunity I turned down. The value of such things is unable to truly be assigned.

My love and caring to you all.

Tami


4 comments

  1. Thank you so much for taking the time to write this. It resonates with my heart and fears and insecurities so deeply. I hope to be able to let go of what I can not control (how much money I make on SSDI) and focus on what brings me joy. I love your blog but totally understand if it no longer brings you joy. Huggles. I wish you much happiness and fulfillment.

    Like

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