Friday, April 16, 2021

13 Years

This is a visual representation of my story that was created for me by Rebeka Ryvola as a participant in Convening The Center.

It has been 13 years since I traveled from the kingdom of the well to the kingdom of the sick. And 13 years since I began to mourn the loss of my previous life.

Unsurprisingly, much has happened in that time. Aside from adding diagnoses and oft changing medication regimens, I’ve earned two master’s degrees and a PhD, I moved from Michigan to New York and then back to Michigan, I’ve lost relationships and gained some, lost my father and a host of other relatives, gained a house, a husband, and a dog.

I started this blog as a way to keep my family and friends updated on what was going on with my health, all in one place so I wouldn’t have to share the same stories over and over again. I also started it so that I wouldn’t feel so alone. At the time, I thought that I was the only 20-something in graduate school dealing with what I was. But as the title suggests, I guess I started it subconsciously as a way to get closer to myself. Looking back, blogging was a way to control the narrative of my life that felt as if it was spinning out of control. It was my story, in my own words. I am sure there are pieces of the story that those involved would disagree with. But when you spend so much time in waiting rooms staring off into space and so much time on exam tables, staring at the ceiling trying to disassociate from what is happening, you are constantly writing the story. I was creating the narrative in my head, not only to capture it and remember, but sometimes also to forget.

In 13 years, there have been indignities, often at the hands of people who were doing their jobs to the extent they were able but failed to see the person in front of them. Failed to see the 22 year old with ambition and wit and sarcasm. Failed to see the person I was losing and the person I was becoming.

I hate these retrospectives because they force me to remember, and often what comes to mind are the worst experiences. The time I had to poop on cue into a machine that had me suspended in the air. The physical therapist who helped me with my constipation issues who un-ironically had the unfortunate last name of Butts. The 27 tubes of blood that were taken from me at my first rheumatologist appointment. The years spent sick before I was diagnosed, the months spent being told it was either nothing or I could be dying.

In spite of the good, those experiences, which fade into memories/nightmares take their toll. Out of each I leak a bit of optimism/hope. I yearn for the innocence and naiveté I once had, that convinced me that people that did everything right didn’t end up chronically ill.

I never appreciated my health until I had to learn to live without it. And I wonder, who would I be today if I had been allowed to stay young a little bit longer? Who would I be without illness? Would I be better or worse or just different? But what’s the point in dwelling on a past that is over and a future that can never be? Pre-illness life is long gone. Living in spite of illness is what remains.

Yes, there is trauma, to be sure. But there is also love. Illness is a litmus test. It shows you who is willing to stand by, even when things are hard. And it shows you who isn’t. Who will call you lazy because they are too lazy to understand or empathize? Who will tell you that they’ll just throw a blanket over your head and walk out the door?

13 years later, I’m grateful that my illnesses are more stable than they once were, glad to have a medication regimen that works. I’m grateful for the friends I’ve made in the chronic illness community, and the opportunities that have come because of my chronic illnesses.

The road is long and the path is not linear. If chronic illness has taught me anything, it’s that you have to be adaptable, open to change, and ready for anything. Chronic illness can be all consuming, but it doesn’t protect you from other things happening. It may feel like a bubble, but it is certainly not a protective one.

Life is full of light and darkness, and life with chronic illness is no different. Maybe even those senses are heightened. The light is brighter and the darkness is darker.

There were probably times over the last 13 years when I genuinely didn’t feel positive about the future, didn’t want to celebrate another year with “a more onerous citizenship,” yearned to go back to how things were pre-illness. I guess that’s why, having now lived through the majority of a world-wide pandemic, the prospect of not returning to “normal,” what life was like before, doesn’t worry me. I’ve lived through the same thing in a far more personal way, where my world changed, but everyone and everything around me stayed the same.

I don’t write as often as I used to, the constant hum and buzz of medical appointments and ridiculous experiences have lessened. But every time I do sit down to write, it pours out of me. I am an expert on my own body and my own story. I have lived the last 13 years to the best of my ability, and in some ways, I feel like the story is just beginning. It has taken 13 years to learn to live with illness, and now I feel like I am having to learn and adapt in new ways. When something has been the focus for so long, how do you take a step back and look at it in the rearview mirror? How do you seamlessly combine something that will always be with you but is no longer front and center all the time? And how do you cope when this thing rears its ugly head again or threatens to put your life and dreams on hold (again)?

So, here’s to 13 years, and hopefully to another 13 multiplied by many, many more. I’m grateful for those of you who are still here with me. It has been a long journey, and I thank you for sharing the ups and downs, and accepting both the beauty and the burden that the journey has brought along the way.

Monday, April 5, 2021

“Anyone Who Wants A Vaccine Can Get A Vaccine”… Unless They Are Chronically Ill Or Disabled

As I explained in a previous post, My Job, Not My Illnesses, Got Me A COVID-19 Vaccine. And my getting the vaccine only solved half my problem. The other half of the problem is that my husband, who is unable to work remotely, and works in a very public-facing occupation, had yet to be vaccinated as of the end of March.

My husband has asthma and high blood pressure. While he’s 37, he’s definitely at higher risk of getting serious illness if he were to contract COVID-19. Not to mention, he lives with someone who is immune-compromised (even though that’s not something that anyone seems to be considering).

He was on no less than five different waiting lists for the vaccine including grocery stores with pharmacies, free-standing pharmacies, the county health department, and multiple hospital systems.

And guess what? Thanks to a local Vaccine Hunters Facebook Group and some chronically ill tenacity, his wife (me) got him an appointment at a CVS 30 minutes away from where we live.

(To date, my husband has only come up on one of the waitlists he was on.)

But the experience confirmed for me yet again that the system is 100% broken. Our local, state, and federal officials have told us that “anyone who wants a vaccine can get a vaccine,” but this simply isn’t the truth. It couldn’t be further from the truth, actually.

Maybe by 2022, everyone who wants a vaccine will be able to get one. Trust me, I’m grateful that vaccines are available and that I was able to get one. I’m grateful that Vaccine Hunter groups exist that use the virtual hive mind to share information. But at the end of the day, don’t our elected officials have some responsibility not only to keep us safe, but to follow through on the promises they make? (And no, I didn’t sleep through 2020, so I’m aware that these questions are basically rhetorical)

As I hear from many of my chronically ill friends around the country and in Canada, who are no closer to getting a vaccine than they were when vaccines weren’t available or have to battle to get one, I feel their frustration. I feel the frustration that those of us who are under the age requirements that were priority, but have significant health conditions, have been totally left behind. Those of us with chronic illnesses and disabilities are not only not a priority, but we are an afterthought.   

As has been the case throughout the pandemic, chronically ill and disabled people have been left behind. And even those who don’t think of themselves in those terms but who are high-risk for COVID-19, like my husband, are simply an afterthought. Even more of an afterthought is that he lives with someone who is immune-compromised.

The longer the pandemic drags on, the angrier I become at the level of risk our elected officials have been allowed to pile on us, with little care or concern for the consequences.  

If you haven’t been able to get a vaccine, I would strongly recommended looking on Facebook to see if there is a vaccine hunters group in your area. I would also suggest that as things open up – (today in Michigan everyone 16 years and up is eligible) – to the general public that it might be easier to secure a vaccine, even though it shouldn’t have been like this. Everyone that was eligible based on age and conditions should have been able to get vaccinated before it opened up to everyone.

I’m looking forward to the day when my husband is fully vaccinated and I’m also looking forward to the day when we can truly say that “anyone who wants a vaccine can get a vaccine”. 

But I’m no public health expert, right? I’m just a patient.