Forward is a Pace
What would you do if you knew someone you cared about had a decent chance of dying in their 40s from cancer?
You have to selectively do “dumb” things …— JW
Now you may be thinking, Tara, but do you need to?? And it’s at this point in the grand scheme of things I will remind you that on my 45 years on this planet, I have done a fair number of things way dumber than running the Boston Marathon (and raising money for Dana Farber Cancer Institute). Shrug, what can I say, I am who I am.
Having led with that opener, let me say, that I acknowledge the concerns expressed about my health. They are legitimate, and I appreciate everyone’s caring and concern. I truly get where folks are coming from given that I had no intention of ever running another marathon again (though to be fair, I also said, never say never) after completing both the London and New York City marathons back-to-back at the end of 2022. I know several folks right now are thinking, “Ha! If you thought that Tara, that really means you shouldn’t be undertaking Boston.”
Yes, but no, because it wasn’t the diagnosis of rheumatoid arthritis (RA), in and of itself, that led to me feeling that my marathon days were over as 2022 drew to a close. I know of several individuals who run marathons with RA, and they take the approach I have taken in the past when it comes to running with my asthma. Instead, it was the reality of the statement I have often said to folks over the last decade when they asked why I ran marathons if they were against medical advice; “there will be a time when my body simply will not let me.”. As I looked at the path in front of me, I did not see a way to avoid or skirt that approaching milestone.
For you see, the RA (I didnt know I had) brought with it a host of symptoms during my marathon training, and the marathons, themselves, in 2022, which took a significant toll on me mentally and physically. During the months of training leading up to both marathons, I was constantly struggling with overwhelming fatigue (ever felt like your body just may quit and you fall over in the middle of the street?), overheating, hydration/electrolyte balance, and on long-run days shooting pain in (what I now know to be my rib joints) my chest that prevented me from sleeping. And well let’s not beat around the bush, then there was, and is my balance, or lack thereof. By the time London happened, I had 4 bad falls in 6 weeks, and then (as we know) I had a lovely fall at mile 1 of the NYC marathon (PS shout out to the gentleman who chased my water bottle when I fell and returned it to me, ensuring I at least kept heat stroke at bay). While I may still laugh at how I didn’t realize it was not just my hip that served as a brake when I fell at mile 1 until I finished, took a selfie with my medal, and wondered what that “black thing” was on my arm (it was road rash in case you were wondering).
I know a) I may laugh, but my body’s ability to handle and block that much pain is not safe and b) running and falling are not a good combination.
But the thing is, when I get told, even by myself I can’t do something, I do not take it well. Yeah, yeah, contrarian. But also, at the end of the day, I am a scientist who has lived with chronic illness, and disability for 30 years. It is a compulsion in me to “solve the puzzle”, even if that puzzle is myself. The overheating? It’s well known that folks with an autoimmune disorder overheat, and I now have two, one (the RA) of which likes making a certain protein our body uses to cause fevers to fight infection; all of which means outside of doing my best to control both of my diseases and minimize my heat exposure, mitigation strategies were nonexistent. In case you are wondering how much I overheat. The thermostat in my basement almost always rises by two to four degrees Fahrenheit and I tend to look like a drowned rat after I exercise. Not a good look, would not recommend it.
Momentary fun fact: electrolyte imbalance and hyponatremia (low salt) are known issues in folks with autoimmune disorders.
You would think I would know that lovely fun fact, but I didn’t. It has never been brought up by any of my doctors over the years and is only something I found out through doing research. Considering how much an electrolyte imbalance can affect one’s ability to function and quality of life I find it amazing that this is not something that is brought up and addressed as soon as a diagnosis is made — looking at you allergists and rheumatologists. BUT it is also something I could, and can, easily address by increasing my daily intake of salt(s) in a way most would (probably, ok, definitely) be considered excessive by any standard. It’s taken me this past year to work out what that looks like and means for my body, but it feels like for the most part, on most days, I have found something that works so that I am not constantly short on electrolytes, and therefore less at risk for overheating (and countless other things). The ironic part is while my electrolyte imbalance and struggles were one of the greatest contributors to my struggles with training for marathons in 2022, I know it is NOT the part of my health that worries most folks even though that is often how people participating in marathons run into cardiac issues (no pun intended).
Let’s be honest, it’s my mobility and risk of falls, not the risk of heat stroke or hyponatremia, that worries folks, and why most think I should limit the type of exercise I do. I mean, fair, my body gives no hints that I am about to tumble, and when I fall, they tend to lead to significant injuries that thanks to the two autoimmune diseases and treatment for them, take longer than the average person to heal (eg, the injury from my fall in October is still healing). My risk of falling, was, and is, very real, and I will be honest, despite now being on systemic treatment for my RA for a year, my risk of taking a tumble remains, fills me with anxiety, and is also why my care team has strongly encouraged me to limit cardiovascular exercise to my treadmill and bike trainer unless I have a companion with me.
But, and, one thing I have continually learned living with chronic illness, is that I cannot let my disease(s) control me. Guide me, yes. Ensure, I take precautions, one hundred percent. Anything else is unacceptable. I can’t live my life being afraid and waiting for the next “bad thing” to happen. Living afraid, and with “what ifs…” is no way to live.
How we go about our lives is something we all face daily regardless if we have a chronic illness. There is no right way, simply the manner that works best for us. Am I still struggling to find what that way looks like with RA thrown into the mix? Yes. It remains a lot of trial and error, which I get, if you are someone who cares about me, can be scary.
I’ll be honest, getting diagnosed with RA , was and still isn’t, devastating to me. For one, my identity is not tied to being healthy, and well I honestly thought at the end of 2022 the RA would just be this annoying thing that I’d get on A medicine, and I would be on my merry way. I wouldn’t have predicted that at the beginning of 2024, we would still be trying to sort out what the best regimen looked like for me, or that I would remain at risk of falls. I was naïve, and will freely admit a bit stupid, as I forgot about how much my immune system hates its own body.
I will pause here because I can hear the groaning, and feel the smack on the back of my head that many individuals (rightly) would like to give me to knock some sense into me. How is it that I think given all I just said, I will even be able to attempt a marathon, let alone complete one (relatively) safely? It’s pretty simple why I think I can, hear me out, please.
First, and most importantly, I am not naïve when it comes to my limits. I know where “my line” is, and I have no problem deferring or walking to the side and not finishing a race. (how much I push myself when it comes to work, seeing friends, and running around conferences is a different matter) If you look at my history, I have chosen to defer or not run some races due to my health. Moreover, when I ran the London and NYC marathons in 2022, my goal wasn’t to get a certain time. It was simply to finish. As I told a good friend in the lead to NYC, my mantra is “be the turtle”, and while over 2500, I presume mostly healthy individuals did not finish the NYC marathon in 2022, I did despite my fall (just saying). I know the only way I can even attempt running Boston is by having patience with my body (being the turtle) and the road in front of me. My goal for the Boston Marathon is the same as for the ones in London and NYC, finish.
And as Jei said when I decided to run my first marathon, “What is the worst that can happen? You try, need to walk to the side, and don’t finish? You will never regret trying, you will regret not trying and limiting yourself.”
Second, and not to throw my rheumatologist under the bus, because I like them and realize I am a medical unicorn, but it has been difficult to get them to understand how much my immune system hates me and how they shouldn’t view me with the same lens as a typical patient with RA (because I am not). For months I have spoken with them about increasing doses, escalating therapy, and how we needed to smash my immune system down hard to gain any level of control that would give me the hope of being functional enough to return to work (god, I want to return to work). Unfortunately, despite my understanding of how autoimmune disease looks like in me and being an immunologist, it has been difficult to get them to understand (not listen, to be clear they always listen, but it’s one thing to listen, another to know and internalize, and make changes in behavior including in how you treat patients) what that means practically when managing me. In November at an office visit, it was as if something finally clicked
Rheumatologist looking frustrated and at a loss
Me: It’s okay to say my body is very resistant to treatment, its not like its the first time (chuffing)
Rheumatologist: I didn’t want to say it, but yes, your immune system is (chuckling)
The dose of chemotherapy I am on is now maxed out like I had been asking to do since July. We also moved me onto an IV form of immunotherapy (from injections) to get more of that drug into me in December. It takes a while for both to work, but I can say as of writing this, that if at the beginning of November I had 10 steps to climb, now I have 7. In my world that is a big and impactful change, and I hope in the next month or so the impact will be even greater. All of this means, hopefully, it will be safer for me to do activities that involve mobility and where I am at risk of falling.
One might still wonder; Tara are you being realistic with yourself about your body’s ability to hold up during a marathon? Fair. The one contradiction that holds, and I know may astound most of you, as much as it hurts to move so many of my joints still to this day, the one time I get any sort of pain relief from the RA is when I exercise. Once I overcome the initial pain, the movement involved gets my lymphatics pumping allowing joints to be “cleared out” temporarily and endorphins to kick in for a little while. Is it a lot of relief? No. Sometimes, it lasts only as long as the workout; other times, I get an hour or maybe two of relief. So, while my exercising, running, is scary to both you and me, it is one of the most important things I can do to help myself control chronic pain, manage my disease, and improve my quality of life.
But, and, there is something I purposely did not tell most people I was going to do and did, in December: run long distance outside. How long? A half-marathon (so only half crazy).
The race itself had special meaning for me as it fell on Jei’s and my anniversary, the marathon version of it was one Jei and I had done almost a decade ago together, and there was a blue run to remember mile that would include a photo of Jei. It felt right for that race to be the one where I tested where my body and RA were at, and if 13 miles was even something my body could handle. Because I wasn’t sure it could honestly. My thought going into it was, that if I could not complete the half-marathon in the allotted time (4 hrs) and safely then while I could fundraise for Dana Farber, running Boston would be a scratch (ie, not completed) for me. I mean that in all honesty. Again, I know my limits. I asked a good friend, and college roommate, who is an MD, knows my medical history, and has lived through a good portion of it herself, if she would do it with me as my safety buddy, and bless her, she moved her call, and went through some travel hell, to do just that. Even more special one of our college roommates came with her to cheer us on. In case you are wondering, we finished in the allotted time.
Did it go how I wanted it to?
No, but I learned, somethings I may need to have as part of long runs including at Boston in the future, and that most importantly my body could handle 13.1 miles fine if I focused on being the turtle.
After all this, I hope I have eased some worry; that despite the Boston Marathon being a bit crazy and “dumb”, I am being methodical in my approach to running one last marathon (because the reasons behind my doing it are important).
So often we focus on everything needing to happen immediately that we forget forward is a pace. Being the turtle can often get one further than you or anyone else thought possible.
— — Tara the turtle
