E5: Conflicting Emotions and The High Cost of Failure

Recorded June 16, 2024: It costs a lot to live in a disabled body. Sometimes the disappointment is worse than the cash output.  But sometimes listening to other podcasts can help you put it all into perspective. 

Connect with me at: LindaBP.com or on IG @LindaBP68

Transcript

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Today, I'm emotionally all over the place for a variety of conflicting reasons. I just got over COVID. My original fear that COVID would kill me was eventually replaced with the very real possibility of COVID creating an intense MS flare. So although I was exhausted and took to my bed like a Dickens character, I wasn't paralyzed. blinded or forced to lay in my own feces. I should be happy. You would think having extra immunity for once would make me a superhero. I mean, I can go anywhere I want this summer. Just, you know, close your eyes and picture a middle -aged woman with a limp wearing a cape with a giant red letter I on her chest. She doesn't leap tall buildings in a single bound. She goes to Wegmans on a Saturday at noon. She goes to yoga studios, maskless, daring to be adjusted by an alt -health anti-vaxxer whose healthy constitution means never needing a modern medical assist ever. I should be thrilled. I'm not. I am a day away from receiving my Cionic neural sleeve and frankly I am deathly afraid to leave the house. The sleeve is a leg covering that stimulates the muscles for walking during gait. In other words, instead of stimming muscles in isolation to hopefully use later while walking, this device analyzes data from sensors in the fabric. continuously monitoring real -time movement to evaluate muscle firing and limb position. It specifically electrifies the muscles used to walk in the proper sequence. In other words, it provides functional stimulation. A personalized algorithm will deliver electricity necessary to activate the muscles specific to my gait cycle. I mean, it's not a transformer like X-Code. It's not a transformer. It's not a transformer like exoskeleton that you wear on top of your clothes that moves you. We're talking about a thin, lightweight neoprene sleeve that you wear under clothing to facilitate independent movement. Again, I should be ecstatic. I'm not. I'm stressed. So why am I stressed? Well, reason number one, fear. I ambulate. but every step is precarious. I barely clear the floor with my foot. There is literally an inch between me face-planting and walking safely. An inch. I don't trip because I walk so slowly and I think about every step, which makes my fear of falling a hundred times worse than the limp. This fear increases my spasticity. forces me to always look down, which changes my center of gravity and worsens my overall gait. Honestly, the moment I leave my house, my stress goes through the roof. Now, only one side of my body actually works. If I trip and injure my only working arm, I'm screwed. Or let's say I break my leg a week before, you know, my neural sleeve arrives, my training begins. That would make me insane. And although I get the sleeve tomorrow, my first appointment to learn how it works isn't until next Monday. So I am only leaving the house if I have to for the next seven days. Reason number two for my stress, cynicism. I've spent 12 years getting my hopes up, convinced that the next AFO specialty shoe device, exercise, therapy, e -stim machine, or adjustment was somehow going to restore some functional movement back into my body. I've purchased three Elevate Foot Drop Braces. That's cost me about $450. I've bought two StepSmart Braces and that set me back $400. I bought a Bracelab AFO for $300. A specialty orthotic I bought a couple years ago cost me around 600 bucks. And let's not forget the Dynamic Bracing Solution Brace, otherwise known as a DBS, that cost me $7 ,000. I also bought the Alinker Walking Bike for about 800, an Upright Walker for about 200, the New Gate Walking System for $600. and I'm gonna guess about $500 worth of canes and hiking poles. Then there's the $15 ,000 I spent on the Neubie device, which is a direct current eStim machine. And God only knows how much I've paid for copays, books, online exercise experts, programs, three years of neurokinetic therapy, massages, chiropractic care, physical therapy, footwear, and associated cobbler costs. Everything I bought. Let me be clear. They are all amazing pieces of equipment. Awesome rehabilitation modalities. None of them were scams. They were all like, they were all pretty awesome. Many of which evidence -based. This isn't a rip. I'm just telling you, this isn't a rip. Thousands of people have done really well using everything that's failed me. But the truth is I've spent about 30 grand with maybe only 5 ,000 of that reimbursable through insurance. The good news? I'm still ambulatory. So I've spent 30k out of pocket to stay upright. And I get praised for it all the time by health professionals. Not getting worse is considered a huge win. But clearly healthcare views success very differently than say the financial world. Imagine if $30 ,000 I invested made no gains in 12 years. You wouldn't congratulate me for not losing money. You'd scream at me for not firing my money guy. And yet 12 years of investing in myself has resulted in no permanent change in functional movement. I've habilitated. but I've never rehabilitated. Okay, I will say I did have one mobility gain back in 2017 while wearing my DBS brace, that really expensive one. That brace was kind of cool. It collected the energy created from a heel strike and during toe -off it propelled my heel and during toe -off it propelled my heel back and up. and allowed my foot to then swing through and complete the gait cycle. It was bulky and heavy and required special shoes and even more specialized cobbler services. But that brace allowed me to walk fast with a cane. It allowed me to power walk around Europe. One day, I swear to God, I walked 17 ,000 steps all over the city of Berlin. It was absolutely fantastic until it wasn't. The problem was my weak hamstrings. And those weak hamstrings kept me from controlling my leg during the swing phase. It was really frustrating. All that extra walking increased the strength in my quads significantly. It strengthened my entire knee, but it did nothing for the back of my thigh. My upper leg became so uneven that it would oscillate and wobble from all that excess energy when I walked. So the more we tweaked the brace, unfortunately, the worse it got. Eventually, I experienced so much burning in my foot that I threw the thing in a box, threw it down in my basement, and returned to a more traditional AFO. And my search for an answer continued. But that one good year, it added a stamp to my passport and increased the strength in a lot of the parts of my leg. Unfortunately, I lost most of those gains when COVID shut down the world. My gait got worse from not being able to go anywhere. So as you can see, getting my hopes up is devastating and expensive. Which is why I love, love, love listening to Christina Applegate and Jamie Lynn Sigler's messy podcast about their crazy lives living with multiple sclerosis. I think they're like the yin yang of MS. Applegate being newly diagnosed versus Sigler's 23 years of experience. One is raw, one is subdued, one is angry, and one is long cross that threshold of acceptance. But as you might know, yin and yang are more than just opposing forces. They are also complementary energies that form a dynamic system. Night and day are opposites that also morph into one another, become one another. And watching these two ladies give themselves permission to experience the other's opposing energy has been really interesting. Jamie is becoming more comfortable expressing her anger. while Christina is slowly turning her melancholy into motivation. I laugh, cry, and relate to everything they talk about, especially this week. Sigler said that although she's thrilled her MRIs have been stable for almost a decade, she's equally frustrated because no matter how hard she tries, she's never been able to improve her walking. Hmm. sound familiar? During her last neurological appointment, her doctor gave her some really great advice. He started by noting her strength. Just because her mobility hadn't changed, it didn't negate the fact that working hard was keeping many parts of her body strong. And then he told her something that honestly, it stopped me in my tracks. Now I'm paraphrasing and adding some context here, but basically he said to her, you keep doing the work needed to be as healthy and whole as possible. And while you're focusing on that, you need to trust the universe. You need to trust that those who work in modern medicine, technology and rehabilitation, that they're doing their part to help people with diseases. It's not all on you to change your body. Other inventors, therapists, entrepreneurs, biotech folks, doctors, and practitioners have a part to play in this. Trust that they're doing the work you need them to do. You keep working hard, focus on yourself, and when new things are created, you'll be ready. She said that hearing those words really took the pressure off. After 23 years, she finally realized, she wasn't 100 % responsible for fixing herself. Hearing her story really helped me this week, because she's right. It's not 100 % on me to fix me. I need to trust the medication I take, the upper cervical chiropractic care I'm receiving, and the neural sleeve that's on its way. The only other thing I think I should do is be real regarding my expectations. You know, the old me was always trying to recreate. the pre -MS version of myself. But now, current Linda, who I like to think is smarter, isn't trying to bring 41-year -old Linda back to life. My version of getting better is not so I can train for a half marathon. It's simply walking without thinking about walking. Seriously, my big, big goal is to walk from my front door to my mailbox at a normal pace, with a cane without looking down at my feet. Other big goals? Approaching a curb without my pulse racing. Negotiating a couple stairs that don't have handrails. Seeing a 10 foot swath of grass between me and another person without breaking into a flop sweat. Seriously, if I've blown off your picnic invitation since 2013, it wasn't you, it was your backyard. Another interesting tidbit I got from last week's messy podcast was when Christina Applegate noted how much she absolutely hates living in a disabled body. I feel you Christina. I hate MS, but I adore you for your honesty, for saying out loud all the shitty things I feel all the time. And Jamie's response to her was great. It was actually great for anyone experiencing a health challenge due to a diagnosis, an injury or aging. She said, and I quote, a lot of why you're not enjoying it is it's hard. It's so hard to live in a disabled body. I will not take that away from you. And I am right there with you. But what makes it harder is when you compare it to how it used to be. She's 100 % right. When you can reach a point of acceptance, and I don't mean giving up and just accepting your lot in life, I'm talking about the simple act of acknowledging the reality of your current body. It really does take away some of the suffering. So if you're struggling with a change in your body, give yourself some grace, do the work to the best of your ability, and trust that the universe has your back. That's what I plan to do. Well, starting in a week after I get my sleeve, after I'm trained to use it. And well, I'll report back. And. That's what I plan to do.