WHEN YOUR “NEW NORMAL” GETS OLD FAST

In this post-apocalyptic time of COVID-19, social distancing, self-quarantining, and Hunger Games-level hoarding of toilet paper and other basic household goods by our fellow human, we’re all still adjusting to the “new normal” and trying to figure out how long it’ll likely stay this way.

And while there are definitely a lot of things that remain uncertain about our future, one thing’s for damned sure – our world endured a trauma this year, one that’s already cost a confirmed 871,166 people their lives and an untold number of millions their jobs. With so many people worried about how to house and feed their families (and safely educate their children), never mind how to keep themselves and their families safe from COVID as shutdown restrictions continue to loosen, it’s safe to say most of us are anxious about and afraid of what our new normal might look like.

Still, human beings are innately resilient. We adapt and overcome, and eventually, our “new normal” feels just plain ol’ normal. Our species has faced and overcome countless changes, innumerable different illnesses, conflicts, and natural disasters throughout our relatively brief existence, and I know we’ll make it through this pandemic as well.

That being said, it’s hard to mentally adjust and adapt to a drastic change in your life when things keep changing nearly every week.

When the new normal is a constantly moving target, there’s never a chance for things to actually feel normal. That’s hard to be okay with.

It’s funny, but the pandemic didn’t make me realize this – my deteriorating health did.

At the beginning of the pandemic, I felt like I was rather well-equipped to mentally prepare for the looming health crisis, even if it was almost guaranteed I’d contract the virus at some point. By the time COVID hit, I’d become quite used to spending days at a time at home, only leaving the house for groceries or meds. I was already well-versed in hoarding food and goods, just in case a natural disaster hit and the stores were closed for a while. And worrying that you’ll catch others’ germs and get really sick? Ha! Been there, done that, bought the punny t-shirt! I figured the ‘rona would be just another health problem to deal with, and I was already a pro at that.

As most of you already know, I’ve been accumulating diseases and disorders my entire life. I was born with Spina Bifida Occulta and a huge lump across my lower back. By four years old, I’d undergone my first tethered spinal cord surgery and was learning how to live life as a sweet-toothed preschooler with diabetes. Before I learned how to do fractions, I’d already learned how to test my blood sugar and give myself insulin shots.

I adapted to my circumstances and adjusted to my new normal, which for years involved keeping track of my blood sugar levels and the types and amount of food I ate as well as the amount of insulin I took throughout each day. It involved going to the ER any time I got sick and couldn’t keep the vomiting under control. It involved getting regular bloodwork taken and yearly check-ups to make sure my spinal tumor remnant hadn’t regrown.

My normal was unlike anyone else’s I knew, but it felt normal to me.

I went through my childhood living my version of normal, and I embraced it (for the most part). As I detail in my memoir, Relentless: From National Champion to Physically Disabled Activist (available now on Amazon in paperback and e-book formats 😉 😇 🤓), I even began to flourish under my abnormal circumstances. I became a repeat national champ in track and field, I got a full scholarship to a D1 school, then an academic scholarship to law school. A year into practicing law, I started my own criminal defense and appeals firm and did a lot of civil rights advocacy. Other than the diabetic eating disorder I’d been nursing since high school and the failed marriage I’d gotten into and stayed in for far too long afterwards, I was killin’ it! Normal and I were cool.

Then my normal changed. My late twenties were spent undergoing about three dozen surgeries and procedures, battling some unknown autoimmune disorder, enduring debilitating, nausea-inducing migraines, and generally feeling like crap. I was going to doctors’ offices almost as much as I was appearing in court. My health and general well-being were fading fast, and it was time to adapt to a new normal or die in my current one.

So, I shut down my law practice, packed my shit, and moved across the country to start a new way of life. It wasn’t long before my health stabilized a great deal and my personal life rose from the dead. Okay, cool.

Then that pesky tumor remnant regrew and my normal dramatically changed once again. I went back to practically living in doctors’ offices. I learned I could no longer sit, stand, or walk for any reasonable period of time, and could no longer mentally focus on my work because of the pain. As I worked my way through a plethora of misdiagnoses, tried out a variety of different pain procedures that did absolutely nothing to alleviate my pain, and puked my way through the opioid family of pain meds, I realized it was time to tap out and medically retired from the federal public defender’s office. Soon after that, I finally received an accurate diagnosis of recurring tethered cord syndrome and underwent my second spinal surgery in thirty years.

Once I recovered, I moved to the greater Detroit area, my husband and I bought a house, and I settled into my “new normal” as an officially disabled person. Unfortunately, the cauldron of constantly increasing and poorly interacting diseases and disorders that is my body has made the concept of normal quite elusive.

In the less than two years since moving to the Midwest, my immune system has weakened even further, making me even more susceptible to viruses and infections (including, but not limited to COVID-19, which I contracted early into the global shutdown). I now have significantly limited peripheral vision, can no longer drive at night, and often have trouble holding things in my hands. I’ve had to relearn how to pass a bowel movement (and in doing so, have had to let more near-strangers look at, talk about, and digitally penetrate my anus than I think anyone would care to admit).

Most of this I’ve taken in stride. Sure, I’ll vent to some close friends and family members, maybe curse the heavens for giving me such a shit body, but then I’ll post or blog or podcast about it, usually infusing the situation with some humor if possible, and move on with my life.

Honestly, up until this year, the hardest thing I’ve had to accept about my new normal as a disabled person hasn’t been the daily debilitating pain or constant exhaustion. It hasn’t been the pelvic floor PT or my near hermit-like existence. It’s been trying to figuring out and make peace with how my increasing needs and limitations have changed my identity and sense of self-worth, both as an individual and as it pertains to my relationships with others.

I’ve had to learn to swallow my pride and ask others for help, let others offer help and accept it without apologizing a million times for putting them out or telling them they really don’t have to. I’ve had to set clear limits as to what activities I can participate in, how long I can stay at a social gathering, and not feel guilty when I’m too tired or in too much pain to cook for my husband and I or even return a friend’s phone call right away. I’ve had to be okay with asking for wheelchair assistance whenever traveling or visiting a museum and not feel guilty for “making” the employee or my husband push me around.

Bottom line, I’ve had to accept the fact that being differently-abled doesn’t mean I’m weak or lazy or a burden or less valuable as a human being. That just because I’m not nearly as productive as I once was, I’m still doing my very best, and that’s what’s important. I can have a meaningful life and make a positive difference in the world, even though the ways in which I’m able to contribute have changed.

All that’s a lot to take in as your new existence, especially when you grew up believing that anything less than 110% is completely unacceptable. Of course, I’d never think that way about any other person with a physical or mental disability, but for me? Unacceptable.

I’ve also had to accept that not everyone is going to understand or fully believe all of my symptoms, and some might even think I’m a hypochondriac, but you know what, who cares? Just because others can’t see or feel my invisible chronic illnesses doesn’t mean they don’t exist or that I have to prove my disabilities to others.

But as someone who’s endured a lot of physical pain in her life, undergone dozens of outrageously painful medical procedures, and been a D1 track athlete, I used to always pride myself on having a really high pain tolerance. I also used to run my own law firm, working a good 100-120 hours a week. I don’t whine or take the “easy” way out or slack off. If there’s even a whiff of someone questioning the legitimacy or severity of my symptoms, my ego’s going to go into full defensive mode. I’m going to want to prove to them that I ain’t no cry baby.

Of course, needing to prove my mental strength and tolerance for pain is unhealthy and unnecessary, and it’s something I’m working on. But a lot of us with chronic pain, especially before we’re accurately diagnosed, are questioned or aren’t believed or are told it’s all in our heads, and that simply compounds the pain and frustration we’re already in.

A few weeks ago, I was finally able to watch the extraordinary documentary film Unrest (now available to stream on Netflix), which was directed and produced by and featured Jennifer Brea, a Harvard PhD student whose then-unknown (or un-/misdiagnosed) myalgic encephalomyelitis (ME)/chronic fatigue syndrome left her bedridden and quite often unable to move or speak.

Like so many of us, Ms. Brea was initially told her symptoms were the result of a psychological issue, that some deep-seated trauma from her past, perhaps something she may not even remember, was causing her neurological symptoms.

In my case, I was told by one neurologist that my neurological deficits and debilitating pain might be from me being too stressed out about something in my life. Of course, this was after he’d reviewed the 3D CT scans and correlating radiologist’s report that proved my spinal tumor remnant had grown a tail down the length of my lumbar spine and was pulling tightly against it. But yeah . . . it’s from a female being unable to cope with stress in her life. 🙄 The former workaholic who’d gone from working 100-120 hours per week to just over 40 before her symptoms started. Right.

It’s rage-inducing to essentially be called a liar or a drama queen when you know something very wrong is going on with your body, and the last thing you want to do when you’re in so much pain and discomfort is to start duking it out with the medical system. Still, there’s really no other option if you want some real answers. And just like so many other brave patients with unknown chronic illnesses have unfortunately had to do, Ms. Brea persisted! She got the medical answers she needed (even if they weren’t necessarily the ones she was hoping for or happy about), and then she decided to make a film about her illness and became involved in disability activism to help others who are similarly dismissed or mistreated on their quest toward effective, quality healthcare. It’s an incredibly moving documentary and I hope you all take the time to watch it.

Anyway, I’m still working on the negative self-talk and the worrying about what others think of me and the mental switch from workhorse criminal defense attorney and civil rights activist to a woman who spends most hours of most days laid up at home while her husband takes care of 99% of the housework and lawn care on top of working full-time. But none of those things were my biggest “new normal” issue of 2020.

My latest mind-fuck is how very quickly my new normal as a disabled person with X number of limitations and Y amount of energy is changing, and how much more severe the consequences have become when I exceed those limits or deplete those energy levels.

This epiphany happened during our recent trip to visit family and friends in Rhode Island and Florida, coincidentally, right after I’d watched Unrest and learned more about the concept of a “crash point” on a cellular level.

Dr. Nancy Klimas, a clinical immunologist at the Institute for Neuro-Immune Medicine and one of the medical professionals interviewed in Unrest, explains that a person’s “crash point” is the point at which a person’s energy on a cellular level has been depleted. If you keep pushing your body past the point in which you have any remaining energy, your body is going to begin to shut down. Simple enough, right?

Unfortunately, for those of us with autoimmune illnesses and other chronic illnesses, our cells can become less and less effective at processing things like oxygen and glucose in order to generate energy, and when that happens, our crash point is going to arrive sooner and sooner after we begin to exert ourselves mentally or physically. Once we’ve used up all of our energy resources, we crash and our multitude of symptoms go on overdrive.

Dr. Klimas’ team works with patients to help identify their available window of time in which they can exert themselves. They are able to determine on a metabolic level what the patient’s crash point is, which then helps the patient better understand just how much they can do on an average day before their body’s going to give out on them.

In my case, my newly found anger and resentment and confusion and frustration stems from the fact that I thought I’d already identified my window. I thought I knew how much I could handle before I crashed, and I was making a real effort to honor that crash point and not exceed it. Unfortunately, it looks like my window of time and energy level has narrowed substantially, at least for the time being.

On a recent trip to visit family and friends in Rhode Island and Florida, I thought I’d be able to manage simply socializing with my loved ones, maybe sharing a meal. I didn’t overbook our calendar because I knew I’d pay for it physically if I did.

But I guess I underestimated the progression of a few of my medical conditions.

One of the new disorders I picked up while living in Texas and was finally diagnosed with last year is cardiac autonomic neuropathy. Another side effect of my diabetes, I now have damage not only to a lot of my sensory nerves, causing me a lot of nerve pain in my arms and legs, but also to one of the nerves that runs to my heart.

Damage to that nerve results in my body having a very difficult time regulating its temperature, blood pressure, and heart rate. I now experience resting tachycardia almost every waking moment of the day, with my heart rate staying between 100-120 BPM as I’m lying in bed or on the couch. I climb the stairs to our bedroom and it sometimes goes into the 130-140s.

But I never expected it to reach 155 BPM just because I needed to void my bladder, which is what happened in the airport restroom during our trip.

I also tend to have low blood pressure and experience a lot of hypotension from the neuropathy, which, combined with the tachycardia, can make me feel dizzy, like I’m about to faint, if I just stand up or go from cold air into heat. Thankfully, no fainting on this trip, although I passed out for an hour after standing up from a seated position a few years ago.

The most annoying symptom has been the inability to regulate my body temp. I now sweat profusely after every shower and randomly throughout the day as I sit in our air-conditioned home. If I’m outside in warm temperatures, especially in the direct sunlight, my body gets all swollen and inflamed and my blood sugar skyrockets! I figured this one out while we were still living in Texas, before the spinal tumor remnant started to grow back. I’d be outside mowing our tiny lawn with a manual push reel lawn mower, usually in the early morning hours to avoid the extreme heat later in the day, and my blood sugar would reach 400-500. I’d end up throwing up and staying in bed for the rest of the day feeling absolutely horrendous.

Nowadays, I stay out of the direct sun, I mostly avoid even the shaded outdoors, and I certainly don’t exercise outdoors (mostly because there’s very little physical activity I can do anymore). When I am going to be outside for a few hours, I’ll make sure I’m in the shade or bring my own, I give myself an extra dose of insulin, and I keep an even closer eye on my blood sugar than normal.

I’ve gone outside a few times this summer and I mostly came out unscathed, although my blood sugar still went into the 300s. Unfortunately, when Yvens and I took our trip, my body didn’t feel much like cooperating.

After just a few days of a couple of hours a day of being outdoor in the shade in Rhode Island, my body was ready to call it quits. It didn’t matter that I was staying hydrated and continuing to pump up the insulin pump. My blood sugar was staying between 400-500 mg/dl for hours, refusing to budge. Then it would suddenly drop, seemingly out of nowhere, and go into the 40s. I’d treat the low, and by then, we’d be on to our next day’s round of diabetic pinball.

As any type 1 diabetic can tell you, extreme highs and lows aren’t just annoying – they’re dangerous to your health. In fact, letting my blood sugar bounce around for a number of years is how I ended up with so many diabetes-related complications, including diabetic retinopathy of the eyes. Nowadays, any time my blood sugar goes high, I can feel the increased pressure behind my eyes and the resulting blurred/weakened vision.

But what I did not expect from the most recent pinballing was that the blood vessels in my eyes would do this:

Please ignore the obvious, excessive airbrushing I’ve done to my skin in this photo. For pure vanity’s sake, I didn’t want you to see my wrinkles and uneven skin tone sans makeup. That being said, I didn’t mess with my eye. This is what my right eye looked like two weeks after the redness started in Florida. Appetizing, right?

After a day of my right eye looking like I was a member of the undead, I was pretty nervous that my eyes were about to hemorrhage again, so I asked Yvens to take me to an ER in Boca Raton. Several hours later, exhausted from the experience and annoyed that the ER doc (who had to call in another doc to check my eye pressure or else was “going to have to YouTube how to do it”) had decided it was probably just “dry eye,” I stayed behind in our hotel room that afternoon while Yvens and Eli went to visit my father-in-law, Yves.

Tragically, Yves passed away unexpectedly just hours after their visit, sending me into a serious guilt and shame spiral for staying behind and missing my last opportunity to spend time with him.

Here’s an image I created from a photo I took of a photo of Yves from when he was younger (very meta, I know, lol). He was so handsome and had such a kind and gentle spirit. I call this “An Ode to Yves.”

So, on top of the exhaustion and the increased body inflammation and eye pressure and the horribly unstable and dangerous blood sugar levels, we were now facing a major death in the family. That meant flying back to Michigan for a few days and then returning to Florida for the funeral services. I decided I should just go for the wake and funeral and then head back home while Yvens spent more time with his family, but even that wasn’t enough to stave off the pain.

Once we returned to south Florida, it took only one day before I was experiencing constant electric shocks to the base of my spine. I mean, it felt as if someone was taking a cattle prod and continuously zapping my lower back. The morning of the funeral, I could barely walk. I’d get shocks leaning over to grab something. Even lying in bed hurt. I took a morphine (to no effect), gritted my teeth through the funeral service, then went straight back to the hotel. I’d more than reached my crash point, so there was no way I could risk attending the gathering back at my mother-in-law’s house.

Yvens’ family understood, but I was still pissed. I’d taken the week in between trips to rest up. I wasn’t outside at all and was doing a better job keeping my blood sugar in check. Now my goddamned spine is going to act up?

The flight home, I thought a lot about what had been making me so angry. Like I’ve said, it isn’t so much the physical pain or limitations (although they undoubtedly suck). My anger is and always has been about my body and my health breaking this unspoken agreement I think I’ve reached with it.

I might as well be shouting into the ether: “I thought we had a deal! I did my part, why aren’t you doing yours?”

The anger and frustration happen when my blood sugar spikes for seemingly no reason or drops right after I’ve just eaten. It certainly happened when the pain didn’t ease up despite my making every conceivable effort to tame it and find its source, and it reached a boiling point when I had to stop practicing law. Right after I achieve a work-life balance and get back to exercising almost every day and eating healthier and doing better with my diabetes, then a tumor remnant decides to regrow? After not moving or growing for twenty-eight years? Really?

And now the anger’s back because my crash point has moved up without warning.

It’s not as if I thought I’d be in the same health for the rest of my life now that I’m disabled. Most of the health conditions I have are degenerative, and several of them seem to be working together to create new ones. I know I’ll have more calibrations to make with my crash point and acceptable limitations before my time on this earth is through.

I just thought I’d have more time with this normal before moving on to its next iteration.

I guess I still have a lot to learn about My So-Called (Disabled) Life. [Oh, how I miss that show! I’ll love you forever, Jordan Catalano! 😆]

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