Runnin’ For Reid
Sunday March 22nd 2015, 11:25 am
Filed under: Friends, Leukemia

Diana Holt, my physical trainer during my last round of leukemia and some time in between, is leading a team on a half marathon in Dallas today. It’s called the the “Dallas Rock-n-Roll Half Marathon.” In an incredibly gracious gesture, Diana and the team dedicated their run to me. They named their team “Runnin’ For Reid.” Here’s a model showing off one of the shirts they’re wearing today:

Runnin' For Reid

Diana wrote her team last night: “Getting ready for tomorrow. This race is in honor of Reid who is running for his life, battling round two of Leukemia. All I’m doing is putting one foot in front of the other.” Good luck team! I hope you’re all satisfied with your performances!

Runnin’ For Reid Logo

Diana runs a company called Bikes Boats & Boots in which she takes people not only on marathons, but exotic locations around the world. Billed as “adventure and fitness travel,” Diana leads cycling and walking tours around amazing sites like the Amazon, Machu Pichu, and Croatia. Check out her website for more information!

Bikes Boats Boots

Thank you Diana! And to the rest of team Runnin’ For Reid!

–Reid.



Moving Story From Friend About Being Reid Strong
Wednesday March 11th 2015, 1:56 pm
Filed under: Friends, Leukemia

My dear friend Cassie recently left me speechless with her blog post about being Reid Strong.  It’s so moving, it brought tears to my eyes and made my mom cry.

Please check out her post on her blog Conscious Composition. 



Blessed By Friends: “Reid Strong.”
Thursday March 05th 2015, 7:06 pm
Filed under: Friends, Leukemia

Last Saturday, I started receiving tons of text messages. It was a while before I could check all of my messages and see the breadth of what a special group of my high school friends and their families had done for me. I am truly moved by their generosity of thought and support. Here’s what I received, roughly in order, with some quotes that stood out:

The Shirt

“Reid, you continue to inspire us with your strength and we all want you to know we are here to support you always. You are loved all across the country and abroad. This is for you Reid!!”

Sachen Babies

Sachen Alex and Summer

Summer Superstar

Sachen Four

Veesers

David and Claire

David Boot Camp

David and Matt

Matt and Tiffany

Gen

Jason

“Reid, you’re a true hero! Keep fightin the good fight! We all stand with you!!!”

Susan

Mallgrens

Mallgrens Gavin

Mallgren Kickball

“Same here. My kickball team is Reid Strong. It took exactly three seconds before everyone wanted a bracelet. You inspire even those that have never met you.”

Millmans

Millman Sasha

Matt and Morgan

Sullivan Four

Christina David and Matt

“Hey! Guess who I ran into into today in SF… love and miss you!” (from Christina Reynolds, Better Than The Machine veteran, close college friend, guest in a city of 8.3 million)

Christina and Cassie

“Some more love from across the country.” (From Cassie Haynes, close college friend, actual resident of city of 8.3 million)

Levins

And, finally, of course, the Levins all suited up in Reid Strong gear generously sent to us.



I’m Home!… For A Few Glorious Days!
Saturday February 07th 2015, 10:39 am
Filed under: Family, Friends, Leukemia

After 30 days in the hospital, many of which were spent dealing with various lung infections, receiving transfusions, all kinds of weird diseases someone can get without white blood cells, plus, of course, the much more expected recovery from chemo, I am home.

I’ll probably only be home for the weekend, until the results of my latest bone aspiration come back. A bone aspiration is not pretty or comfortable. Someone drills into your pelvis to get various kinds of bone material to determine what is going on with your leukemia. And it HURTS. For days and sometimes weeks.

At that point, it will be decided 1) if I need more chemo, 2) what kind of chemo, 3) and/or I don’t need anymore chemo and go straight to the bone marrow transplant from my sister Rachel. It’s amazing, she’s adopted and my real sister, Rebecca couldn’t do the transfer (this is all a lie)(or is it?). I’m so proud of them both for registering to be BMT donors this past summer before I was even sick. The first life they’re saving together is mine. I couldn’t be more grateful.

To all of you that have been texting me in the hospital with no response, I’ll try to get back to you soon. I was very out of it for a long time and even responding to texts was very difficult. I’m making an effort to get back to everyone this weekend.



I Am, Once Again, Fighting For My Life Against Leukemia.
Tuesday January 20th 2015, 9:47 pm
Filed under: Family, Friends, Leukemia

As of January 6, 2015, I am, once again, fighting for my life against leukemia.

On January 6, ironically one very late night before the seventh celebration of Reidmission (January 7, 2008: the date my original leukemia went into remission), I was diagnosed with a recurrence of my long-thought-dead-leukemia.

It’s the exact same kind of leukemia that I had before: pre-b-cell acute lymphoblastic leukemia without the Philadelphia chromosome. And just to make me feel at home, I’ve already had my first case of pancreatitis.

The process for getting rid of this particular case of ALL has been quite different than fighting it off the first time. It’s taken much more energy–and will continue to take more energy, including a bone marrow transplant from my sister. Thusly, I haven’t even been able to write about it until just now, much to my chagrin. In fact, I recognized very early that I wasn’t going to be able to write everything down about this bout with leukemia. I’ll do my best to write when I can.

In the meantime, if you’d you’d like stay apprised of what’s going on, I’d encourage you to visit my Caring Bridge website for the most current updates (not quite minute-by-minute, but still the fastest) on what’s going on with me. It’s also setup to allow you to le leave non-obligatory comments if you feel so obliged.

Thanks a bunch to the friends and family that helped get that website online. Once again, it is apparent to me how much I need my family and friends to get through this.

–Reid.



7 Years Alive! Plus: I’m Afraid To Get Into My Bed, Which Is Where I Traditionally Sleep
Monday December 15th 2014, 4:29 pm
Filed under: Family, Friends, Health (Not Cancer), Leukemia, Me, Myself, and Reid

This is not at all how I intended to start this post, but check this out. I took a glance at the “At a Glance” section of all the numbers on my blog and noticed some kind of magical mathematical blog achievement (blogchievement) wherein the number of posts I’ve written and posted is almost exactly equal to the number of comments that have been made by the likes of you, if you use some very complicated and impressive math that I figured out how to do all by myself:

Posts *100=Comments

Very Complicated And Impressive Equation: Posts*100=Comments

Look, I realize that it’s a little off. The thing is that the number of comments would be exactly 100 times more than the number of my blog posts, but I didn’t notice this magical maths until after I responded to someone else’s comment with my own comment. Since that last comment was by me, it doesn’t really count. I’m fairly certain this is how Stephen Hawking justifies his complex calculations. “Sure, I filled up eight chalk boards, but something’s just not working… I’ll erase this part about E equaling MC². Eureka! I’ve done it again!” is what he probably exclaims to himself as he coughs on all that chalkdust.

Like I said, this is not all how I intended to start off this blog entry, but I noticed it and I was obviously caught up with it. That rarely happens with me and any sort of math.

However, that being said, I just celebrated Alive Day on December 6, which will lead to more math in just a minute. Stick with me while I remind and explain Alive Day. For those of you that don’t remember or never read any previous posts from this time of year, Alive Day is the anniversary of my diagnosis with leukemia. It may seem strange to celebrate the day I was diagnosed with cancer, but had I not been diagnosed that day, I may very well have died. I’d spent months visiting various doctors, trying to find out what was wrong with me. During all this time, the bad stuff that leukemia does to the blood in the body was done to a very advanced degree. So I was very lucky that I left New York, came to Denver, and was almost immediately diagnosed so that I could be treated.

There’s math associated with this particular Alive Day (I don’t lie) which is that I was on chemotherapy for exactly three-and-a-half years, which is the normal amount of time that a man has to be on chemo for leukemia (women do two-and-a-half years, because they don’t have all the dangly bits that men have in which leukemia likes to hide).(I should clarify: leukemia likes to hide in cerebrospinal fluid that surrounds the brain and spine, and women absolutely have CSF, brains, and spines that are just as good as men’s, but they don’t have testicles, in which leukemia also likes to hide in men).(See. spines are sort of dangly and so I didn’t want there to be any confusion.) (Phew, this is too much parenthetical notation, I gotta get out of here…)

SO, three-and-half years of chemo. For me, that meant a lot side adventures, including cranial radiation, hemorrhagic pancreatitis, two not-hemorrhagic bouts with pancreatitis, a psychotic break where I thought I was asleep for two-and-a-half days and everyone else thought my brain had up and broke, a ten day period of delirium that I can’t remember, because delirium is state in which one can’t form short-term memories, getting a big ulcerated radiation burn on my back that went all the way to my spine that didn’t get fixed for several years, paralyzed body parts, and being traked (not a word, but should be shorthand for getting a tracheostomy). It was all kinds of fun. If you weren’t around, you really missed out.

The math (finally, the math) is that, as of Alive Day 7, I’ve been recovering from chemotherapy for the same exact amount of time that I was on chemotherapy. Three-and-a-half years. On Alive Day, I was in a celebratory mood about being alive for seven years against a tremendous number of odds. I saw a movie with my dad and had lunch with my folks and my friend Matt. Math came up again on December 7, when I realized that every day I was recovering was now a day longer than I’d been on chemo and radiation. That sort of bummed me out. I mean, knowing that Alive Day 7 was coming bummed me out from time-to-time, especially over the summer. I never, ever, in my wildest dreams thought it’d take me longer to recover from chemotherapy than to finish a long course of chemotherapy.

In fact, the night I was diagnosed (December 6, 2007), I was told I’d probably spend 30 days receiving chemo in Denver and then I could probably return to New York, where I could receive chemo treatments while going about a slightly more chemoey version of what had been my semi-normal life. But then I got hemorrhagic pancreatitis, and New York was pretty much off the table. Another bummer. But, when I was told when the end-date for my treatment would be (May 11, 2010), I was naïvely confident that I would simply return to New York the following summer. Another reality check, another bummer.

I had to wean off medications, I had to lie in a hyperbaric oxygen chamber for a month so there would be enough blood flowing to my ulcerated radiation burn to get out all of the necrotic and radiated tissue so that a plastic surgeon could close up the hole in my back, I had to undergo tests to identify and work to get rid of my radiculopathies, diabetes from the anti-psychotic medication I take to keep my tactile hallucinations under control (read this),I had to wean off medications.

Wait, did I already mention having to wean off medications? Yes. It’s because the system is broken and it makes me mad. It turns out that when a doctor puts a patient on tons of medications, there’s not really anyone or anywhere to help get off those medications unless the medications are being abused. For people like me that followed all of my doctors’ orders but had become physically dependent on some of my meds (which is different from addiction because I wasn’t abusing those medications, I was following strict orders), after chemo, I was left adrift still on dozens of medications. I got off of most of them just with the help of my mom. But certain meds, especially methadone (read this) of which I’m still working to get off the successive pills for the successive pills that aren’t methadone (I’m sooooo close) require professional help.

A large part of them problem with recovering, I know now, is that I suffered brain and nervous system damage during chemo. I have a brain injury and my nervous system is in a state of disarray. I can say those things now because they’re true and I’ve accepted them. My nervous system, at least, is slowly repairing itself. The same can’t be said for my brain. In fact, it’s hard to say much about my brain. We know that repeatedly injecting toxic chemotherapy drugs into my CSF covered an entire hemisphere of my brain with a chemical burn. But we also suspect that the electrical signals that control certain brain functions are not firing right. And the reality check there is that science can’t fix that in 2014. Those electrical impulses are not even something we really understand. Which is kind of humbling and amazing at the same time.

As a result of my brain damage, I’ve suffered for a year-and-a-half now from tactile hallucinations. I saw myriad neurologists about the hallucinations, most all of whom said the hallucinations must be a psychiatric problem. I visited the Mayo Clinic in Minnesota (in February–not ideal) and they were completely unable to help me with my hallucinations. They’re so realistic that if I hadn’t been going through this for so long, I’d swear real people were touching me, torturing me, and molesting me. But I know now it’s a result of my brain damage. It took two years after chemo for them to start and while I’ve had some good nights where they don’t appear, I’ve had to live with them almost every night since last July.

Like I said up above, I’m extremely close to being off the narcotic that was used to replace another narcotic that was used to replace methadone in June. This weird tradeoff of narcotics is not how someone who hasn’t abused medications prescribed by a doctor normally gets off of whatever they were prescribed. It’s how heroin addicts are weaned off of heroin. I’ve worked with two separate drug addiction specialists since May and neither ever seemed to understand that I wasn’t abusing methadone–I just needed help getting off of it. I wanted off of it. And I was never on it because I took heroin. I was put on it for pain during my six month hospital stay in 2008 and I successfully weaned myself off of almost all of it during chemo. I just needed help and I never found a person that would have been more appropriate to help me.

Part of going off a narcotic is that the lower the amount being taken, the more the brain wants to hang on to the drug. Withdrawal for titrating down from large amounts is easy, but–at least to me–it’s oddly inverted for the smallest titrations. As of about two weeks ago, I’ve been taking one quarter of a pill every three days. Before that, I had been taking one quarter of a pill two days in a row, with one day off in between. This has definitely been the hardest part of the wean so far. I’ve been experiencing visual and audio hallucinations, sweats, chills, not knowing where I am, terrible headaches, intense dizzy spells, and a fierce comeback of my worst tactile hallucinations. It’s especially weird, but true, that I only experience hallucinations when I’m lying down in bed. So, naturally, I’ve been afraid to go to bed.

Between avoiding bed and laying in bed and feeling like I’m being haunted by demons all night, with an array of visual, audio, and tactile hallucinations, plus not knowing where I am, I’m not getting the sleep I need. That creates a huge problem. It makes it so I can’t do anything I want to do. Sleep deprivation keeps me from my friends, it keeps me from parties, it keeps me from cleaning my room, it keeps me from playing music, and it keeps me from writing. I started writing this on December 7, and it’s now December 15. I’m thrilled that I found the energy to finish it, but I’m again bummed that I couldn’t put this out on Alive Day and that I haven’t been able to write more blog entries. There’s a lot more I want to write about. Some of them are things I’ve wanted to write about for years. For some of those, I have drafts, and others, just ideas.

I’m mad and I’m bummed. Not with any one doctor or practice, but with our medical system. It just isn’t equipped to treat someone list me. And while I haven’t found anyone else experiencing tactile hallucinations (part of me expects I never will), there are tons of people just like me that are orphans of the medical system (a term coined by my psychiatrist). Not only do the medical resources to treat us simply not fully exist, but very few doctors have the courage to take on cases that they so completely don’t understand and say, “I don’t know how we’re going to treat you, but we’re going to try everything we can.”

In a way, it’s a result of living in 2014. One day, I’m sure all of my conditions will be understood and treatable. But they’re not right now and I’ve had too many doctors send me away because they’re scared of the unknown. The medical field moves fast, but medical mysteries move faster. I am certain that between me and my most trusted doctors, we will juryrig a way to make me better, to get rid of my tactile hallucinations once and for all. I’m also certain that one day, that won’t be necessary–science, the medical field, and especially the way doctors treat patients will be able to take on brain damage and nervous system damage like mine. I can’t wait.

–Reid.

P.S. (Update): I read through this post and realized I never mentioned that my radiation was cranial in nature, meaning it was shot directly into my brain. I guess brain damage can make me forget about how I got my brain damage. Oh well.



Please Allow Me To Fill You In.
Tuesday December 17th 2013, 2:45 pm
Filed under: Family, Friends, Health (Not Cancer), Leukemia, Me, Myself, and Reid

I’m on some very sedating medications and I’m not getting very good sleep. This is kind of a terrible combination. If you’re one of the millions of people that’s ever really wanted to experience what it’s like to be a zombie, without all the brain eating or getting shot in the head with a shotgun, this combination is totally for you!

I’ve been spending a lot of time in bed trying to get any kind of good sleep. The rest of my time has been spent not in bed, trying to act like I’ve been getting any kind of good sleep. This act requires not falling asleep in my soup, not falling asleep in anyone else’s soup, and talking in an energetic manner in which! I just imagine! that there are! ¡exclamation points! scattered throughout everything! I’m saying!! I’m a real method actor.

Anyway, being all zombied up has made writing difficult. It’s really made everything difficult. I’m not really doing much that I want to be doing, which is a lot less of what I want to be doing than I would ideally like to be doing. I’m not getting out of the house much, let alone my bed. At least it feels that way. When you’re a zombie, you kind of lose any and all sense of time. And my sense of time was really messed up before, anyway.

It’s possible I’m spending more time out of bed than I think and that I’m doing things like blankly staring off into the distance. But I’m definitely not doing much of the kinds of things I want to be doing, like writing, playing musical instruments, or, most especially, socializing.

I’m on these sedating medications because they help ward off the evil spirits that haunt me at night. It occurred to me recently that in previously writing about my inpatient EEG, I’m not really sure that I could have given any less important information. So here’s what happened:

-The EEG was performed to test whether or not I am experiencing cute li’l seizures in my brain that are causing hallucinations, which I may have previously referred to as “evil spirits that haunt me at night.” But that was mostly facetious.

-The doctors took me off my anti-seizure medications slightly warmer than cold turkey. They did it over two days, which did not help prevent withdrawal at all. Cold turkey would’ve been better, because it would’ve been faster and there would have been the exact same amount of irritating withdrawal effects. Also, “cold turkey” sounds more appetizing than “slightly warmer than cold turkey.”

-I had a lot of hallucinations in the hospital while my head was superglued to all those EEG wires (or were they superglued to my head?) that showed all the electrical activity going on inside my brain.

-The EEG did not register any abnormal electrical activity in my brain while I was having full-on tactile hallucinations. This means one of two things: A) I don’t have epilepsy or, B) my batteries were drained. Since the notion that I run on batteries is preposterous, the doctors concluded that I don’t have epilepsy.

-Not having epilepsy is unquestionably a good thing. I mean, there’s not really any reason anyone would say, “Aw shoot, I sure wish I had epilepsy,” except in the extremely narrow vein of, “Aw shoot, I still don’t know why I’m having hallucinations.” But I’m pretty happy I don’t have epilepsy, even if I don’t know why I’m having hallucinations.

-There are other kinds of seizures that are not caused by epilepsy. They can be just as l’il and cute and in the brain as epileptic seizures, but they can’t be detected by monitoring the electricity bouncing around the brain. In fact, there’s not any one super easy way to detect non-epileptic seizures. So… that’s kind of a bummer.

-At any rate, there’s really strong evidence to support the fact that I’m having seizures and that they’re causing my hallucinations. For instance, when I take an anti-seizure medication, my hallucinations go away.

If I can break out of the bullet points (I guess they’re really hyphen points) for a moment, I’m really tired and really need to go to sleep. I’m also having what feels like neuropathic pain in my fingers. It really hurts and is not something I can remember having since chemo. Anyway, I want to finish this tomorrow so I’m not going to publish it tonight. Evil spirits that haunt me willing, I will finish this tomorrow (it’ll be today to you). That’s the plan, anyway. Something else could always come up, like, say, staring blankly at a wall, but I’m really going to push myself to get this done.

You have reached the end of Side A. Please flip the tape over to Side B.

Welcome to Side B.

Well here we are in the future! And, look! I’m going to write the rest of this post! When I say it’s the future, I mean that it’s the future of me from yesterday, a guy who didn’t really have all that much faith in the me of his future in finishing this up today. Which is today. But here I am doing it, you jackass! Take that, Past Reid!

Sorry for all the super-advanced temporal discussion, I’ll try to tone that down for the remainder of this entry.

There are only a few more things I’d like to add about the inpatient EEG:

-A big group of friends sent me a brand new iPad to use in the hospital so I wouldn’t get bored. I can’t overstate how amazing my friends are. Not just because they send me material goods, but because they’re a big, huge safety net for me. While I’m tightrope walking between health, happiness, control and depression, loneliness, and confusion, I remain confident that they will catch me should I fall.

-They’ll be there because they’ll be rallied. Amongst my truly amazing friends, there are a few pillars that have made it clear they will never stop supporting me and that they will go out of their way to see to my well being no matter what. Friends from my very early childhood through friends from college and beyond.

-My family, my sisters and my parents, are pillars as well.

-I’ve been asked a few times lately if I’ve lost hope. Each time, I’ve considered the question very carefully. And each time, I think about these pillars. They give me hope. It doesn’t go away through all the confusion and depression and waiting, of which there’s a lot. I’m very lucky.

-The waiting is the worst. During chemo, there was something planned every day to eradicate my leukemia and make sure it knew it was not welcome to come back. Since then, I have had doctor’s appointments months apart, with no new help or guidance in between. Being sick in any way, mentally, physically, whatever, anything, and waiting is the worst.

-I think I spent more time in 2013 waiting for doctor’s appointments, test results, and important phone calls than anything else. I think, despite all that I’ve gone through in recent months in trying to deal with my hallucinations and immune system (and yes, I feel very much like “I’ve passively gone through” these things rather than “I’ve actively done” them), despite those things and all the scattered, delightful brief moments of joy in which I’ve been able to take part, 2013 has been the least productive year of my entire life.

-I will never, ever have a year like 2013 again.

-In January, I will be meeting with a doctor who specializes in non-epileptic seizures.

-In February, I will be traveling to Rochester, Minnesota to undergo a full health evaluation at the Mayo Clinic. It will be a comprehensive analysis of every nook and cranny of my body. The Mayo Clinic specializes in investigating what health problems people have that no one else can seem to put their finger on.

-In between now and those two appointments, I’m working with my psychiatrist, in whose care I feel very comfortable. He wants to get me better as much I want to get better. He is very skilled at formulating new plans and new ways to take on my problems, but also keeping me grounded so that I won’t be crushed if a new idea doesn’t work. He’s taken over the role of several of my other doctors, which I would say is not ideal. It’s not how the system is supposed to work. But, honestly, I’ve had several people on whom I relied this year let me down. Or, more appropriately, drop me from a great height, smack onto the ground, left to pick myself up and move on. My psychiatrist has been the antithesis of this. He’s done everything short of holding my hand, and I’m sure if I asked, he would.

-There are several other professionals that care deeply about me and my health. But I either barely or never saw them this year, simply due to the circumstances of the year. I look forward to getting back into contact with all these people in 2014.

In closing, I’d like you to know that I grew a mustache for Movember to raise awareness for men’s health issues. As Movember came to a close, I decided to keep my mustache, as it was described variously, by other people, as “dapper” and “societally acceptable, at least on your face.” So it’s still there. Right there on my face.

–Reid.



I’ve Arrived Down The Road. Thank You For Being There For Me.
Tuesday November 05th 2013, 9:57 am
Filed under: Family, Friends, Health (Not Cancer), Leukemia

This year has been a struggle. I lost a beloved cousin and her mother, my aunt. I lost a close confidant to suicide.

I spent so much of the year waiting for the thing that would help me. Waiting for the day and the person that would make me better, that would finally fix me. Appointments scheduled distant months away, only to prove fruitless when I’d arrive. Small steps forward threatened by new, complicated issues wanting to push me all the way back down the mountain.

Since the summer, I have struggled with violent and painful hallucinations that I can only feel, but cannot see. Whenever and wherever I try to sleep, I experience sensations of my limbs sawed off, my torso stabbed with knives, and my skin pierced with hundreds of burning needles. I am held by dozens of hands and I am molested by my own brain.

I have also developed vertigo and the tremors I earned from chemo have worsened considerably. Many of my doctors believe these things are all due to tiny seizures in my brain; so tiny that they don’t cause physical convulsions. Instead, they shake up my central nervous system just enough to cause me to feel that I cannot trust any of my senses.

When I had leukemia, there was evidence that some leukemic cells might hiding in my cerebrospinal fluid, the liquid that surrounds my brain and spine. I received radiation treatment to my brain and chemotherapy drugs injected into my skull in such a way that it splashed directly onto my brain and then stayed contained, killing things in the waters my brain and spine soak in. This particular chemotherapy drug was so toxic that one hemisphere of my brain bears a chemical burn that can be seen in MRIs and other advanced imaging.

Believe it or not, I’m not complaining. All of those things were part of a grand plan to save my life. Here I am: I am alive. All of those toxins and all of that radiation worked. They obliterated my cancer.

Unfortunately, though, as a result of the radiation and the toxic chemotherapy, my brain and spine are not as healthy as they once were. I was warned of possible side effects before I began receiving radiation. Hallucinations, vertigo, and tremors were all things I might experience “down the road.”

It seems I’ve arrived down the road.

I’ve had many tests run over the past months, but to diagnose the exact mechanism in my brain that’s causing these problems, I need to go into the hospital as an inpatient so that epileptologists (seizure experts) can study my brainwaves over the course of five days. There will be wires superglued to my head the entire time I’m there (checkout the bottom of my last entry for a picture of the wires I’ll be stylin’), and while I’ll be able to move about my room, I won’t be able to leave it. I’m hoping that the epileptologists will be able to gather all the information they need from this hospital stay.

It’s been a few years since I’ve been an inpatient at a hospital. Being an inpatient is very boring, which again, is not a complaint, just the fact of the matter. If you’re ever going to stay in a hospital for even a day, make sure to bring something to entertain yourself for more hours than you expect to be there. When I told my friend Jason that I was going in for this hospital visit, he told me to make sure to load up my iPad with lots of comics to read. When I responded that I don’t own an iPad, he was aghast to learn that I’d been reading comic books on my iPhone.

“How is that possible?” he asked.

To which I responded, “Lots of squinting.”

Joking aside, Jason decided to do something very kind for me.

Jason coordinated with a large group made up mostly of our tight knit group of high school (and many pre-high school) friends (plus some other very sweet people) to buy me the latest iPad to pass my time during my hospital stay. Over the past six years, I have emphasized over and over that my friends are my drug of choice–they are the best medicine to make me feel well. My friends are amazing even when they’re not bestowing material gifts upon me. The iPad is wonderful, and I thank them all for this fine gizmo. Even more importantly, though, what I take from this is my friends’ willingness to support me in getting well, even after so many years, climbing so high up the mountain, and walking so far down this road.

Thank you all so much. I love you all.

–Reid.



Friends, Weddings, Happiness, and Health.
Saturday August 24th 2013, 5:51 pm
Filed under: Family, Friends, Me, Myself, and Reid

I am truly blessed to have so many great friends in my life. It only makes sense that great friends are also great human beings. Naturally, a lot of those great human beings gravitate towards one another as friends, collaborators, and spouses. Over the past several years, I’ve had the honor of attending many weddings and celebrating with many great friends as they married many equally great human beings.

I’ve written before that friends are my drug of choice. When I’m among friends, I am filled with an energy that is otherwise absent from my life. I am more powerful when I have friends around me than when I am alone. Their presence is extraordinarily addictive, lifting me up mentally, emotionally, and physically. I feel wanted and understood and inspired and happy. Who wouldn’t want to feel that way all the time? Eventually, though, without exception, at that inevitable time when we are forced to part and go our separate ways, the tremendous high I get from my friends turns into an intensely bitter withdrawal.

Reuniting with groups of friends is my ultimate motive for attending weddings. I’m sorry, brides and grooms, you’re obviously very important on your wedding day, but what you do best is give the rest of us a reason to celebrate. And what better way to celebrate than with people we love. With friends we don’t see anywhere near enough in our daily (or, too often, yearly) lives. And, yes, celebrating the union of two great human beings. All in an atmosphere ambient with overwhelmingly positive feelings: happiness and friendship and fun and love and togetherness and, maybe most of all, a shared confidence in a wonderful tomorrow for our two great friends.

Despite all my health problems, I’ve attended almost all of my friends’ weddings (though I’ve mostly steered clear of the ones to which I’ve not been invited). I missed Sarah and Tucker’s steampunk wedding a few years ago, for which I’d grown out my chops accordingly. I missed a joyous reunion with friends and with New York City because, for all the energy I spent pushing myself to be there, for all my immense desire and want to be there, my body wouldn’t give. I was just too sick to go.

I’m missing another wedding right now for the same reason. Melissa and Ryan were supposed to be married in Yosemite National Park today, but due to forces beyond their control, they had to move to another location. I’m confident that, though fires drove them from Yosemite, today will be a beautiful, wondrous day. Surrounded by their friends and family, who have gathered to celebrate that bond of love, support, and loyalty that transcends any specific place on a map, to which Mel and Ryan are committing themselves. There is no question that the celebration of their union will be just as grand, that the love and friendship of their guests just as strong, and the pact to which they are both committed just as powerful as it would have been in Yosemite.

Such purely happy moments are emotionally and physically painful to miss. It’s always tough missing bachelor parties and rehearsal dinners. It’s always tough being on the first bus back to the hotel when the party’s just begun. It’s always tough not being a part of the post-wedding antics, whether they’ve taken place in bars or sub shops. Those antics go on to become the stories that are told over and over and over because they’re the best stories. They’re the stories of friends coming together and, after all the pomp and circumstance, being themselves. Being comfortable with one another in a way that only the best of friends can be.

I wish I was a part of all of those stories. I wish I was feeling the high of the energy created by being with my friends today. I wish I could be with Mel and Ryan, celebrating their awesome life event. As sad as it makes me that I can’t be a part of any of those things, I know that today is a happy day. Two great human beings are becoming one whole. There’s nothing better that I could wish for these two great friends.

And so I choose to be happy today. For Melissa and Ryan. For all the guests that are able to reunite because of that special commitment Mel and Ryan have made to each other. And for me, because I realize that having great friends means there will always be more shenanigans that one day turn into the stories we tell over and over and over forever.



“Where The Hell Are You, Reid Levin?”
Thursday August 22nd 2013, 11:49 pm
Filed under: Friends, Health (Not Cancer)

Oh, hello! How very interesting that you should ask where the hell I am. I was about to answer that very question. As it turns out, where the hell I am and where the hell I should be are not even remotely close to being the same place.

I should be in San Francisco right now with my friends David, Claire, and Matt.

Instead, I’m in my room at home, which is a perfectly comfortable and familiar place in which I often try to sleep, but it’s no San Francisco. What it is is a room in the basement, which has led to it being referred to variously as “the cave,” “the dungeon,” and “the Bedroom of Solitude.” In turn, I have been identified as “the troll,” “the dungeon master,” and “not Superman.” I have it on good authority that, contrary to popular stereotypes, trolls’ prefered domiciles are, indeed, caves. Okay, that might not be true, but it’s okay; several of my best friends are trolls.

All right, enough about my cave.

David and Claire recently migrated to the hills of San Francisco from the cheesesteaks of Philadelphia. Claire is a skilled doctor who was selected to work at hospitals in San Francisco, coincidentally, as a doctor. Some time ago, our friend Melissa announced that she would be getting married in Yosemite National Park this weekend, so I devised a plan to crash David and Claire’s home in San Francisco and drive with them to Yosemite. Since I dreamt this whole scheme up before David and Claire were even certain about where Claire would be working, I’d like to take some credit–not all of it, just most of it–for their happy new life in California, where they would have moved regardless of my plan.

(Phew, I’m sure glad they’ve enjoyed California, so that I didn’t have to use that alternate sentence I prepared but am glad no one will ever read*.)

I feel like I might have gone off topic here. Let’s see… so, I’d planned to go to San Francisco to drive with David, Claire, and Matt (in from Hawaii) to Mel’s wedding in Yosemite. The plan went into motion seamlessly this (Thursday) morning, with only one minor hitch: I was too sick to fly today. So I remain in my aforementioned Basement of Solitude. Matt got there fine, though, so don’t worry about him. And David and Claire still live there in some sort of home, so their part in the plan has no problems. I’m currently planning to feel well enough to fly out there tomorrow (Friday) afternoon and pick up the plan from there. Unfortunately, I’m painfully aware that my life doesn’t always conform to my plans. That doesn’t mean I’ve given up hope! No, I fully intend to be on that airplane tomorrow! Most especially during the time it’s flying to San Francisco.

I’ve been sick for about a week-and-a-half with all kinds of symptoms that have ranged from nuts to bonkers. I’ve been writing when I’ve felt up to it, which hasn’t been nearly enough for me. I miss writing when I don’t do it and I always fear I’m going to forget things, such as what made a particular situation special enough to write about. I’ve been keeping notes, which I’m planning to use to complete some posts over the next week about important things like my great new doctors, their great new discoveries, their great new plans for me, and what’s already gone wrong. In fact:

Reid Levin will return in “Hallucinations Slow Forward Momentum, But Fail To Stop It.”

That’s a teaser to get you to keep reading. Reid’ll probably return before that, though, with an update on making it to San Francisco. That update will probably also contain lots of hopes and wishes and demands that Yosemite National Park stop being so on fire.

Luckily, I’ve learned to be very flexible with plans.

–reid.



*Unused alternate sentence I prepared but am glad no one will ever read: I’d like to point out that my very-clearly-sarcastic remarks about moving to California were taken way too seriously by both David and Claire, so I bear absolutely no responsibility for their miserable new life in California.