Birds of a Feather

I’m sitting in my 3rd full infusion, and thought it’d be a good time to share an update with you all.

It’s been exactly two years since my MS diagnosis. Time flies when you’re having fun! September 11 of 2019 was the day that I received an answer that explained all the weird things I had been feeling in my body. Burning, itches deep under the skin that could not be itched, strange tingling like I had been holding a power sander for hours, and unexplainable fatigue. It’s strange to think that most of the last two years have been lived through this pandemic. Talk about heavy! Navigating a new disease and treatments while the world was all but shut down has felt like a lot at times. 

To keep things organized, I thought I’d break this update into two pieces. The first being a general update on my overall health, as the number one question I get almost on a daily basis is “how are you feeling?” Then I’ll jump into some of what I’ve been thinking and learning through it all (a question nobody asks). How does that sound? 

How am I feeling? My symptoms are all still pretty much the same, but we’ve decided to go ahead and sprinkle a couple new ones on top of those. Because why not? Generally, the worst symptom continues to be the burning in my limbs. People ask if it comes and goes. The only way I know how to explain it is that everyday is the new normal. I never really understood the old fable “boiling a frog alive” until now. How I'm feeling today generally becomes the baseline to judge the next day against. I’m not quite sure how hot the water in my pot is, so I’m not always able to give a good answer to the question. But I do know that I appreciate you all asking! 

A couple new ones that we’re adding to the pile are vertigo and dizziness. These symptoms can make mornings a bit rough, leaving me feeling like I was the guy who closed the bar out the night before. But it generally subsides within an hour or two. The last thing and newest symptom are the eye issues. I have some friends with MS who’ve experienced various forms of blindness or intense eye floaters. My right eye has decided to act up a bit lately, and that’s probably the scariest one. I’ve always been willing to accept pain, even immobility at times, but leave me the eyes! When it's at its worst, it feels as though I've just stared into the sun for a few seconds. Eventually, it subsides and my incredible 20/60 vision comes back beautifully. Yes, I know I need to be wearing my glasses more.

I am still receiving infusions every six months, taking a medication that wrecks the immune system, and in many patients, makes creating any antibodies to fight viruses nearly impossible. Some of my MS friends around the world are on their 4th booster shots with no positive antibody results. Perfect timing during a pandemic, right? Many people in my situation are having to choose between stopping their medication and risking MS relapses (I have friends who this has happened to) so that they can take the vaccine, or forgo the vaccination and stay on their chemical cocktails to protect their bodies from attacking themselves.  A lot of unknowns and varying opinions on both sides from reputable Doctors. I don’t want to have a debate on the COVID-19 vaccination and its effectiveness, but there are over 10 million people in the United States in a similar boat as me. It’s definitely a tricky situation and adds new layers of stress. I am no longer allowed to step foot in some of my favorite places here in Rochester because of my auto-immune disease and potential inability to effectively take the vaccine. It’s been a difficult thing to wrestle with and has established a new level of sympathy in me for people with MS, and empathy for all the immunocompromised fam out there.

Another question I’m asked often is whether or not I'm still following my no gluten, dairy, soy, legumes, eggs, sugar nutritional approach to eating. Aside from accidentally licking my kids' mac n’ cheese spoon on occasion, or a friend handing me something they say is safe for me to eat, later to find out it had some sugar in it or something, I'm still following the plan. Whether it helps or not and how it relates to my MS, I can’t say for certain. But if we’ve learned anything during the pandemic, it is that nutrition and healthy choices can play a big part in how severe the virus is in a person. I do know I feel as healthy as I ever have and I do often wonder if I had eaten this way my entire life whether or not things would be different. I’d challenge anyone who says eating this way would be awful to come over for a meal on me. I’ll convince you otherwise. 

So what have I been learning since my last update? Well, just to be safe I went back and read my last post which was dated September 11, 2020 to make sure I wasn’t writing the exact same thing all over again. That’d be boring for you all and would make me look crazy, but I’d just blame that on the MS brain fog. I do have some new things to share, though. It may just be mumblings, but they’re honest mumblings. So bear with me.

Many of you know that I have a deep faith in Jesus. How he lived his life is something I try to emulate on a daily basis. Some days are better than others. There are days I fail miserably. Amy and the kids can attest to that. To put it plainly, it’s an everyday struggle to “see Jesus” in the crap, let alone live like him. And not just because of my disease, but because of the hurt I see around me. Friends whose young children are being diagnosed with cancer, leukemia, and other things kids under 10 should never deal with. I can’t help but to beat back anger and bitterness when I hear these things. 

Through it all, I’ve been learning a lot more about empathy. Empathy seems to be a word I’ve tried to anchor all of my thoughts to over the last year. Empathy is feeling WITH someone. It requires the ability to understand and share the feelings of another. I think that the ability to experience true empathy walks hand in hand with our willingness to be uncomfortable. I am a creature of comfort. We are a nation of comfort. Don’t believe me? Well, if I could somehow get the media to run another news piece on grocery stores running low on toilet paper, I guarantee that the majority of us would run out and buy all the rolls, just so we could ensure months of comfortable bathroom time while our neighbors who couldn’t get there figure out other options.

In a time where the world seems more polarized than ever before, empathy seems to be extinct. If the inability to listen to each other had a stench, we’d all reek of it. Empathy requires courage to feel and hear things from others that we might not fully understand or agree with. It requires uncomfortable conversation flush with listening first, speaking second. Empathy requires us to wave from our side of the fence, maybe even reach over the fence and shake hands. Instead, we’ve become more accurate than ever before with our stones, able to nail our neighbors in the side of the head from Guinness Book of World Records distances. We’ve all become experts at winning debates behind computer screens, posting the newest article on the pandemic or politics without having real conversations with other humans that don’t look like us. Myself included. Conversations require courage, courage spurs empathy, empathy breeds wisdom.

I’m going to share a confession. I have no empathy for people who have no empathy. I need to work on that.

If you’re reading this from somewhere other than the Northeast, you may have never experienced the migration of Canadian Geese. Just this week I was sitting on my back deck watching flocks of these beautiful birds fly south for the winter. They’re a beautiful sight to see, from the sky at least. They’re evil on the golf course. Either way, The phrase “birds of a feather flock together” popped into my head. Typically the phrase has always had negative connotations. At least for me it has.

“Those democrats are all awful!” “Republicans are idiots!” “Well, you know what they say, birds of a feather flock together!” It got me thinking more about that saying! Are there any species of birds that actually flock together with other species? If so, why? I was surprised to learn that there is mixed-species flocking.

One reason may be that such flocking increases the number of eyes and ears available to detect predators. A mixture of species can take advantage of each other’s unique abilities, leaning on each other’s differences for the good of the whole. 

Here comes my big analogy. You see, our ability to empathize requires relationship and intentionality with those who may look and think differently than you or your BFF. It requires courageous conversation and willingness to lean into each other's unique abilities and experiences. Empathy is greater than sympathy because it moves beyond feeling to action. It is a decision to share in the pain of another, and that decision always comes at a cost. Oftentimes that cost is our comfort or admission that we’ve been wrong. 

Jesus is the epitome of empathy. When he saw Lazarus’s friends weeping at his graveside, he wept with them. When he saw Zacchaeus up in the sycamore, knowing he was one of the most despised men in his town, he chose to call him down by name and share a meal with him in his own home. 

Birds are doing it better than us! 

Everyone is walking through something. Together, let’s choose to learn more about the road someone is walking before we shout at them to change their route. Be kind to each other. Let’s be birds of different feathers that flock together. Take it from me, comfort is overrated anyways.

Finally, be kind to those immunocompromised humans out there. Thanks for reading and thanks for the love. 

Jeff