Traveling While Disabled // New York City

My husband's greatest dream is to live in New York City. He travels there often for work, and takes great pleasure in wandering the neighborhoods, block after block, with no real plan when his meetings are through. He'd love to live there someday "in a third-floor, walk-up apartment." Sadly, his disabled wife derails this plan for the "true New York experience."

He's not wrong: walking up the stairs and everywhere else you need to go is the true New York experience. Last week when my own plans took me to New York, he got to see New York through the disabled lens when we had some evenings free to "wander" the city together, which consisted of me on my crutches at a snail's pace, and him walking somewhat patiently behind me. Even my Sheldon Cooper-like husband knows that to express his impatience would be socially unacceptable. But I let him have a moment.

"This is annoying the shit out of you, isn't it?" I asked, sweat dripping down my face. Between the humidity, the crowds, and the constant shooting pain in my right leg, I felt like Mama June in a marathon.

"...yup." He replied somewhat sheepishly, but mostly with the candor I've come to know and love/hate about him. Beyond this, he doesn't complain. In part knowing better, and in part knowing I'd have something to say about it if he did. This is the real picture of marriage: standing by your partner, but wishing you could walk at your own pace...fifty blocks ahead. Since he is familiar with the "in sickness" part of the vows on a daily basis, I'd say he's entitled to it. After all, who was carrying my shopping bags?

The one place that got it right was the Bite Beauty Lip Lab. Coincidence? I think not.

This was my third trip to New York, and I'm in worse condition than I ever have been. I am now walking with crutches permanently, dealing with pain daily, and I'm in some sort of purgatory between crutches and a wheelchair. I would have chosen the wheelchair option, but my previous trips to New York were a clue as to how accessible the city is. (Read: it isn't.) Instead, I opted to walk through the pain as best as possible, because there might not be a "next time" that I can get into that rooftop bar with no elevator.

It is extremely frustrating that New York is regarded by some as the greatest city in the world, yet it is so far behind in terms of accessibility. Nowhere was this truer for me than in the subway system, the most inaccessible part of my trip. Despite my need to prove myself, my body could only stand to take the subway twice. During the second trip my husband and friend had to call a cab after we emerged from the subway station because the trip up the stairs had left me unable to go on. Though I traveled to/from major parts of the city (Times Square and Soho), I only found ONE elevator and I couldn't even use it because it was on the wrong side of the platform. My friend surmised that because it was beneath Barclay's, they likely paid for it. And the city isn't entirely to blame, he noted, as the subway system is chartered by the state of New York.

Is me taking the subway twice a representative sample of the system at large? It would seem so. After hearing my frustration about my trip, this morning a friend of mine posted this article discussing New York's pubic transportation system. Only 21% of their subway system is accessible. This handy map gives a physical representation of that 21%, and notes that barely more than 100 stations out of 490 are accessible. (Not necessarily fully accessible, though.) And while many are quick to point out that the bus system is entirely accessible, the site also points out that it is hardly a sustainable method of controlling commuter patterns.

Cobbledygook

Beyond that, why am I, on the 25th anniversary of the ADA, still having choose to sacrifice my health, or make alternate route plans? With a Master's degree in policy, I understand that change does not occur overnight. However, to be nearly 3 decades after the ADA and only 21% of the way in "the greatest city in the world" is not only a shame, it gives people like me little hope for an accessible New York in my lifetime. In a world where phone apps put out updates faster than the moon's orbit of the earth, I wonder how accepting of the status quo we would be if "the system is over 100 years old" was an excuse for the technology we use daily. Only, it is a choice to use technology. I, unfortunately, did not have a say in choosing my body's operating system.

As I clambered up the stairs to exit the subway, my husband pointed out a sign about ADA access improvements being made to the system. Ironic placement for such a sign, considering I was halfway up the stairs on a landing. In looking at the Capital Plan online, MTA states: "NYC Transit is on pace to make 100 stations fully accessible in accordance with ADA standards by 2020. With investments made through 2014, full ADA accessibility at 89 Key Stations will be complete or in progress." The Capital Plan seeks to make ADA compliant the final 11 stations, including a handful of others. This means that in five years, on the 30th anniversary of the ADA, the subway system will be about 22% compliant with ADA standards for those of its 10%+ disabled residents. 

And while you may argue that 10% may include people who are disabled, but not mobility impaired, the Capital Plan also mentions ADA compliance in terms of Braille signage and platform edge warning strips. Furthermore, as the NPR article I cited above mentions, this doesn't even take into account the scores of people who don't choose to identify themselves as disabled but have an impairment, those who are temporarily impaired, or senior citizens, nor does it take into account travelers with disabilities (in a city that sought $70 billion in tourist dollars), all of whom could benefit from an ADA compliant system. It was also brilliant of NPR to mention how the elevators in accessible stations were utilized by those carrying luggage and strollers, i.e., those most likely to take their abilities for granted. It painted a clear picture of the plague that is New York's able-bodied privilege: those with full ability taking advantage of the path laid for them by their disabled counterparts. Thank the Lord that elevator is there for your Bugaboo. At least, in 21% of your stations.

When people are in good health, it is so easy to take it for granted. Amazingly enough, for all I have been through medically, my current space is one I never even imagined I could be in. Just five years ago during my first trip to NYC, I could get up the subway stairs using the railing with just a bit more effort than the average person. It was a hit to my pride to see how much of my ability has slipped through my fingers. I grew up disabled, so I adapted to the challenges presented to me because my body didn't know any differently. To be in a state of regression is foreign and frightening. It is difficult to be kind to yourself when you feel your independence slipping away. To make myself walk up the stairs wasn't simply "foolish", it might very well have been the last time. I can at least walk away knowing that my body gave up, but I didn't. Until your own gives up, you can't fully comprehend that feeling of accomplishment.

As a person who loves and lives to travel, though this is immensely frustrating (and painful), I remain undeterred. Though my trip left me with a swollen shin and a possible need for X-rays, I refuse to stay away. It is a place near to my husband's heart, and I love to see his face light up in New York the way mine does on the west coast. But more than that, for me to return and to put my physical self in the space of an inaccessible world makes me an example. I hope that by making bar managers scramble to take me up the "easier" back set of stairs or the maître d' get me a chair, I can make at least one person think about their "grandfathered in" space. It's a little easier to make people give a damn when you're in their face. Beyond the long shot of making people think, my words are a farther reaching and more permanent representation of what it is like to be a disabled traveler in New York.  It is difficult....but then again, so am I.

Traveling in Pain // Thank You For Being a Friend

Another day, another set of health challenges. Lately, my right leg (supposed to be my "good" leg) has been the source of severe pain and weakness. I am back to using 2 crutches. Of course, this couldn't come at a better time: we are currently on a 2-week trip to the east coast and midwest. One of our destinations was none other than one of the world's most inaccessible cities (in my opinion), NYC. As always, I was determined not to let the setback ruin my fun, even if it killed me.

I do not take kindly to limits, especially when they are set for me. Limits set off my inner control freak. My family can attest that I push myself to the limit, simply just to spite the situation. However, as I slowly learn to "take the help", I've learned a couple of things about myself and the people I call my friends.

First, I am discovering the lengths my friends will go to in order to both protect me, even when I will not protect myself, and to allow me to participate to the fullest extent. This is something I come to expect and take for granted from family members. (Logic: they have to help me.) When a friend does it for you, it is touching. Being in a less-than-optimal physical situation, one learns quickly that a true friend walks with you and not ahead of you, even when you will not admit your desire to walk beside them. My friend in New Jersey, P, intervened twice on my trip. First, she insisted on getting me a wheelchair at the mall so that we could BOTH enjoy ourselves (and she could benefit from my sage wisdom at Sephora). Second, she pointed out that even she herself does not run to all ends of Manhattan in one day, and that my Manhattan wish list needed to be whittled down not just for the sake of my health, but for the sake of sanity.

Second, I learned just how much I internalize. Today, I went out with my old college friend, D, who noted how much she's been learning about me through my blog and writing. Because D was one of the people I was closest to in college, I was a bit surprised about how much I kept her in the dark about my health...until I really thought about it. As a young adult, I only shared things about my health when it was absolutely necessary. In fact, when at D's house for Thanksgiving during my freshman year of college, I barricaded D from the room when her father (a doctor) was helping me take care of my foot. At that age, I was embarrassed about my health. I was afraid people would perceive me as "lazy" or a "hypochondriac" if I asked for help or discussed my issues. As pride starts to give way to age and experience, I am more open about not just what I'm going through physically, but emotionally as well. I had a good cry on D's shoulder today about my disappointment in how fast my physical state is deteriorating in my 30s and my resentment for the seemingly effortless way my peers are living life and starting their own families. While others sign up for subscriptions to mommy blogs and parenting magazines, I search for assistive walking devices and feel more like a subscriber to AARP.

And because they're my friends, they know to tread lightly when trying to help me. P later asked if her insistence at renting a wheelchair was an insult to me, knowing my fierce independence. D scolded me for my insistence on taking the "shortcut" to the restaurant, which included a near roll down a hill, and made sure I was taking proper breaks while shopping. In actuality, when I let go of my pride, my heart swells with gratitude when my friends will go to such lengths for me, even when my attitude is the biggest obstacle. I should be the one to teach people that shame is not a necessary emotion for my physical situation, but my friends are the ones teaching me this lesson.

I've been holding in a lot of emotion and disappointment this month as I battle with my right leg. Having to limit myself even further as I try to travel and enjoy myself was, if I'm being honest, horribly depressing. Being embraced, physical limits, emotions and all, by true friends lightened my emotional load more than they could possibly know. Many friends have walked beside me over the years, but this week I learned to accept it for the sign of friendship that it is, and not for the "but they have to" lie I told myself over the years. Letting go of the fears I have about how others will percieve me because I have been in the company of genuine and true friends has felt like an exhale of the breath I have been holding unnecessarily for decades. Thank you to these 2 wonderful women that stood at my side this week. 

This morning, I took my Lexapro because of Robin Williams.

This morning, I took my Lexapro because of Robin Williams.

I had two small mental reminders to myself yesterday to get my week back on track: remember the dog's flea+heartworm pills, and get back on track with my own medication. Only one of those things happened...and it involves flea prevention. Like a lot of people, I "forgot" my own medication, thereby forgetting to prioritize myself. One of those "I'll get to it right after this" tasks that never come to fruition.

I had a hectic July. Unfortunately, like a dog or a child, whenever I get out of my routine I tend to let things slip, namely my health. Before I departed for my trip, I was proud that I refilled my prescription in a timely fashion. I was really going to stay on top of it this time. But like countless other times before, the refilled prescription never made it out of my suitcase. Several other events in July made the 5 seconds it would've taken to swallow a pill seem like it would've taken hours. I hate to start and stop medication (as I am wont to do when I am trying and failing to be a model patient), so instead I dream up the "perfect time" to start my medication again. For some reason, "now" never seems like a good idea.

On top of everything else wrong with my health, I have major depressive disorder. Both genetics and environmental factors are textbook guesses as to the cause of MDD, and I fall into this category. Given my father's own death by suicide and my struggles with my physical disability, I don't believe I had much of a fighting chance in avoiding such a diagnosis. What I do believe, however, is in my fighting chance not to meet such an undue fate. My fate is not sealed by depression or genetics, and I consider myself one of many in my family who will honor my father's legacy by living the life he was medically incapable of living.

I am not ashamed to admit my diagnosis. In fact, it came at a time when I was just starting to learn how to become an open book about my disability, which was a major step in me accepting myself. It sounds odd, but I spent a majority of my life not accepting the disability as part of my life. By owning it, I learned not to let it control me. Ironically, it's easier to wear the "badge of honor" from depression than it is from Spina Bifida. Society tells me Spina Bifida is not my fault. Only part of society tells me that depression is not my fault. And nothing makes my voice louder than the ignorant members of society who invalidate my father's memory or my own struggle by calling it a "choice".

Despite being unashamed, my health (physical and mental) is a battle that I liken to wrestling an alligator. Sometimes you're the alligator, and other days you're the human pinned to the floor. With the mental factor, and you have yourself a chicken-and-egg debacle: Am I depressed because of my father, or because of my disability? Am I sad about my mobility issues, or does my depression lead me to be sad about my mobility issues? Is it more like a Venn diagram? And in this over-complication of things is me "forgetting" to take my pills, waiting for the "perfect time" to restart.

The "perfect time" came yesterday as I drove home from the grocery store, hearing over the radio airwaves that a beloved actor had taken his own life. I pulled over and immediately dialed my mother, unable to relay more than just that he was dead, and suicide was suspected. At the point where the "suicide" bomb was dropped, I was unable to listen to further details. My family is all too familiar with the pain of losing a beloved man who appeared to be happy on the surface. My own father was a kind and well-liked man whose death by his own hand might never make sense in our lifetime.

In the absence of my own father, Robin Williams was one of those Hollywood dad characters from my childhood that always managed to strike a chord with me. One of the films I quote most, Mrs. Doubtfire, debuted a few years after my father's death at a time when I was just starting to think it might be OK to laugh again. I associate the film with a time in my life where any small fraction of happiness was clung to with desperation. I still quote the film regularly with friends I watched the movie with in junior high. In fact, four days before his death I was on Facebook making Mrs. Doubtfire jokes...yet again. 

I normally don't jump on the public grief bandwagon. I read the news, perhaps express my sympathies publicly once or twice, but I try to keep a respectable distance between myself and the story. At the root of it, in that gap between the public and "the story" is a person and their grieving family. To express more than just sympathy in divulging actual grief seems disingenuous to a person that I did not know personally. However, watching the world grieve for such a beloved man struck very close to home.

When bad things happen, it can be difficult to turn to Facebook. None of us are immune to being hell-bent on ramming our opinions down the gullet of social media. However, the outpouring I saw yesterday, at least on my feed (thank you all), was a positive one. Suicide prevention hotline numbers, mental health awareness memes and articles. For once, it felt like the collective was taking a positive approach to our responsibilities as contributors to "the machine". While I don't have high hopes that this will continue, my real hope is that the loss of such a treasured person will educate the ignorant on the issue. If the funniest man on earth is not immune to the pain and despair that depression brings, no one is.

In an article by Forbes so well-timed it couldn't have been scripted, it was reported that researchers at Johns Hopkins may have identified a genetic biomarker that could indicate suicidal behavior. This gives me hope in an otherwise hopeless situation. This could give survivors of suicide a MEDICAL answer to their long-unanswered question: why? This could be the tangible response we are looking for to silence the ignorant who claim that suicide is a "choice". 

This morning, I drink to that with a gulp of water and my forgotten pill. Taking care of oneself is a learned skill. I do not come by it naturally. Nature, in fact, works against me on my quest for better physical and mental health. But before me are those who led by example, fallen heroes in their own wars, who remind me that tomorrow is, indeed, another day and that I can actually try again.

There are all sorts of different families, Katie. Some families have one mommy, some families have one daddy, or two families. And some children live with their uncle or aunt. Some live with their grandparents, and some children live with foster parents. And some live in separate homes, in separate neighborhoods, in different areas of the country - and they may not see each other for days, or weeks, months... even years at a time. But if there's love, dear... those are the ties that bind, and you'll have a family in your heart, forever. All my love to you, poppet, you're going to be all right... bye-bye. - Eugenia Doubtfire 

They See Me Rollin'... // The Target Scooter

Yesterday I did something that I swore I would never do. For years I have been completely resistant to the idea of doing this activity. Not only was I afraid of what others would think of me if I engaged in this activity, but I was afraid for the safety of all of those potentially judgmental people...

I took the electric scooter at Target. 

It's no secret that I love shopping anywhere, anytime. Perusing the aisles of any store is my solace, my happy place. Also, I like to think that there is truth in the phrase "shopping is my cardio". Living with a physical disability, I like to take that one step further and say "shopping is my physical therapy". In fact, during a particularly challenging and emotional physical therapy session 2 years ago, my physical therapist suggested that I do my exercises in a park or outdoor environment in order to make it more enticing rather than just doing them at home. My destination? Stanford Mall. 

Over the years, however, I have found that shopping for extended periods (whether just window shopping or carrying an armload of purchases) is incredibly fatiguing for my legs, and sometimes not in a good way. The aftershock from the impact of traipsing those hard floors can sometimes carry into the next day. In fact, the current issue I am having with my knee came to a head when shopping with a friend. I nearly passed out from the physical pain I was in (though I had a smile plastered on my face because I was desperate to enjoy the afternoon) and had to leave the mall (gasp!) empty-handed. Unfortunately, it seems that retail therapy is not the best form of physical therapy for me lately. 

While I am a major lover of online shopping for this reason, sometimes nothing beats wandering the aisles and checking out the merchandise. Instant gratification aside, it's also something that's tied into my feelings about my independence: I want to know that I don't HAVE to rely on another person or service to get the things I genuinely need and to do the things I enjoy. 

When I had a cane after surgery in 2012, I still managed to push the cart with one hand while using my cane with the other. Since I have had to use crutches, I have found that putting the crutches under one arm and pushing the cart takes major coordination. Motivated by the desire to maintain my independence and to get some exercise, I shopped like this even as my body has made the gradual decline into the situation I am in today. While it's do-able when I need to run into our small local grocery store to grab a couple of items, having to wander a larger store like Target is more of a challenge. Even so, shopping smaller stores is no simple task for my legs, or my whole body for that matter. (Side note: for major grocery hauls, I have them delivered. Delivery service is inexpensive, and getting groceries feels like more of a chore than a Target run.) But after nearly passing out in the middle of a children's clothing boutique, I realized that push had come to shove and my days of shopping as physical therapy, at least in big box stores, were over.

During one of my water aerobics classes, we were discussing pain management and how we as a culture can be resistant to our options. We resist taking aspirin for a headache. That's for weaklings. Taking the electric scooter? That's for lazy people. We don't view these options as health management. It clicked with me then that taking the scooter was not "the lazy choice". I physically can't get around the store with a cart and crutches. I am the person those devices are designed to help. I know that I have tried everything I can to be independent on my feet, but right now (and maybe from now on) I am unable to do a large shopping trip without help.

Swallowing my pride (and my fear), I hopped on a scooter at Target yesterday afternoon. With my list in tow, I headed to the cleaning supplies aisle. I found that they are surprisingly pretty easy to drive (though slightly slower than I would have liked) and maneuver. I wish they were a little more compact, as it can be difficult to pass a cart coming down the aisle, but I actually enjoyed myself. The fear and shame melted within minutes, and I was so thrilled with being able to get the job done myself that I puttered around the ENTIRE store just because I could. After all, no trip to Target is complete if you haven't gotten at least a few things you don't really need. 

The thought of not being able to do the things I love the most as I deal with the ups and downs of my disability is frightening. My top two favorite pastimes (travel and shopping) require major walking. It is frustrating not to be able to do these things the way in which I used to be able to do them--which was a challenge even then. As life becomes progressively more challenging for me, I have to remember that taking the help is not giving up, but rather reclaiming my life.

I took a video of me learning to drive the cart. Because operating a phone while using the cart seemed like a great idea.

Split Knee Caps and Post-Mortem Birthdays // Putting the Spite in Despite

Yesterday I found out I have a split knee cap. I will have an MRI done this Sunday to further investigate and see if I have good cartilage. This will help determine whether or not surgery will be worth it. (They'll be consulting with a trauma surgeon.) Given my condition, surgery might be a waste as it could be a recurring problem. Fearing another ruptured tendon seems stupid now, given that I wish it were now my problem. The grass is always greener elsewhere...

I am unclear as to how I injured my knee this way. My new doctor noted that isn't unusual, given my lack of/poor level of sensation in my legs. Neuropathy is a mixed blessing. However, I'm still managing pain in the aftermath of the injury. Walking is not easy. I've been doing modified moves in my swim classes. I would prefer not to add "chronic pain" to my already long list of conditions.

The doctor was very nice and is helping me set up my own "mini clinic" within the hospital for the various problems I have with my spina bifida. As he noted, people with SB have great care until they're 18, then it tends to fall off the map. Truth. (In all fairness I let it fall off the map because I am/was exhausted by dealing with it.) He also recommended that I get Canadian crutches. Kind of resisting because I am already sick of looking like the poster child for being a crip... I can only grin and take so much. Right now, I'm not even interested in color coordinating them with my clothes.

So, like the doctor said, more questions and less answers as of right now. It's never cut and dry for me. Mobility is always the end goal. Preserving my half-ass situation. I feel like the boat that keeps springing leaks...

Yesterday was also my late dad's 57th birthday. Speaking of things that never get easier, that tops the list. This year marks 25 years since his passing.

Though I had my good cry yesterday (and I feel it was completely justified given all that yesterday was) I am hanging onto the aire of mystery that will linger until after the MRI. (Heck, maybe longer.) Here's hoping, like the X-rays of the rest of my affected areas showed, that I'm in pretty good condition despite my long list of issues. Fortunately, it still feels easier to push despair away because I've got too much to do than expend all of my energy tending to my health and emotions. I'm far more interested in fighting for what I have left than pissing and moaning about what I don't.

I'm not the poster child for being a happy gimp. I hate my situation. I'd trade many things (but not everything) to change it if given the opportunity. Everyone deals with their health in different ways, and my way isn't to be the smiling inspirational speaker that tells you that you can overcome any obstacle you set your mind to. I've never been one to happily accept being force-fed this situation. My way is to say f*ck this, and to put the "spite" in despite. I do things despite my health, despite the fact that I wasn't supposed to be able to, and despite the things thrown at me. Any chance I have to spite my poor health, I take it.

Maybe it's more socially acceptable for people to say "you can do it!" rather than "f*ck this". However, social acceptability seems more of an enemy when your own body goes against the norm, and you have no choice in the matter.

Back to Glam // When You Look Good, You Feel Good

One of my favorite brands is Laura Mercier. I heard about the brand and its products and techniques through a male makeup artist at my friend's wedding several years ago. (Hence my love of male makeup artists!) A few months later, I managed to scrap together some extra cash from my student job wages and headed to Macy's at Stanford Mall to try a few of the products. Between the excellent service I received that day and the quality of the products, I was hooked. While my love of beauty products knows no bounds, Laura Mercier is one of the staples in my makeup bag and a brand to which I remain loyal.

Something I admire about the company aside from its products is its mission to give back. The Laura Mercier Ovarian Cancer Fund was established to raise funds for awareness and research through the sale of a few select products on their website, and 100% of the proceeds from the sales of these designated products go directly to the fund. One of these products is the Bonne Minne Healthy Glow palette. This palette has been cited as a product that helps women struggling with the side effects of chemo to get their healthy glow back. Having lost someone in my age group to ovarian cancer, I am grateful to any person or company raising awareness for this particular disease.

While my health struggles are vastly different, what I can relate to -irrespective of ailment- is the search for normalcy in your day. Makeup and clothing bring me a sense of normalcy that disability can sometimes destroy. I've learned that it's OK to hang onto whatever brings you joy in the moment and whatever makes you feel good despite your daily challenges. I've detached the guilt I once felt about the joy that makeup brought me as there's no frivolity in taking care of yourself. Having a routine helps me cope with changes in my health, and putting on my makeup is part of that routine.

Recently, my mother entered a contest on Laura Mercier's Facebook page which put a call out for stories about inspirational women. My mother, never one to believe that contests odds are stacked in her favor, wrote about my health struggles and how I inspire her because of what I have been through (and mentioned that I have her hooked on the products as well). Much to our surprise, she won! Last week I received my treats.

I received a "stickgloss lip color" in the shade Brown Sugar. The site aptly describes the color as a "wearable-pink-brown". As sheer, yet buildable, as the coverage is, I would also say this dusty color leans a bit mauve-purple. This color and formula is exactly what I like to wear, and it's a perfect nude/my-lips-but-better shade. I also received a lip pencil in the shade Hazelnut Tea, which is described as a "neutral-beige-pink". While this looks to be an accurate description in the swatch below, on my lips it pulls very tan, so I'll have to play with this one a bit.

All in all, I am completely happy with the products I received. I am really touched that my mom nominated me, and that they chose me. What the company perhaps didn't know when they chose my mom's entry is what an inspiration she is to me. Not only has my mother been by my side for each and every health struggle, but she did so alone after my father's death when I was 7. My mother taught me how to be strong and independent, and I couldn't have become the woman she described if it weren't for her guidance.

Currently, this blog has only one other post about Laura Mercier products, and it was a deluxe sample that I did not enjoy. To rectify this situation and to properly convey my love for this brand, I will be blogging about a beloved Laura Mercier product each Monday in June. Hope to see you back here for "Mercier Mondays"!

To the Stumps // On Deciding to Keep My Toes

I'm keeping my toes for now, but it begs the question: what shoe size would I be if I didn't?

Tomorrow I'm having "surgery" to drain an abscess of fluid from the left foot. I suppose it's technically a surgery since it will be done in an operating room, though I have requested to skip the anesthesia since I have little to no feeling in my foot. They're hesitant to use the PICC line for anesthesia (no one wants to touch it if they're not in charge of it...fine by me) and I have terrible veins. At my recent MRI, they literally had to give up looking for a vein. Literally, the thought of stabbing around for a vein frightens me more than taking a scalpel to my foot as I watch.

The doctor was unwilling to "just take a syringe and stab" as I had suggested, and opted to do the procedure in a clean operating room to minimize the risk of airborne diseases. You know, the common sense way of doing things. From my understanding, the incision should be small and minor. The doctor is aware of my unwillingness to stay off of the foot, so it's not something I'm planning on doing and he seems fine with that. Many of our conversations revolve around the phrase "but in your situation..." I've met the guy twice and he already gets that there are different rules to my game, and I'm not always making them. The game requires much strategy and many workarounds. C'est la vie.

On a much more serious note, he gave me some foot for thought for a long term strategy: transmetatarsal amputation, or a partial foot amputation. Just taking the one infected toe is not a long-term option, as the rest of the toes would break down within 3 years. Instead, they would take all toes and part of the foot. This would require staying off of my foot completely for about 6 weeks, depending on how I heal. If I do not, the foot will pop open "like an alligator mouth" as he put it, and expose the remaining tissue and bone. (Thanks for the nightmares, doc.) A wound vac device assists with the healing process of this procedure so that the skin will close around the foot.

Only a few things sway me into the direction of this: for one, it would irradiate the infection I've long struggled with. (In the left foot. Bear in mind, my right foot is only taking its turn being good. It's taken its share of turns being bad.) For another, should my foot become infected in a more serious incident than I've ever dealt with before and my entire foot needs to be amputated, a prosthetic requires 50% more energy in order to get around. With the partial foot, I would only need 14% more energy to get around. (These are his numbers.) Finally, I have to wonder if half a "normal" foot would be better to look at than an entire dilapidated one. Those who only play by practical rules might question why aesthetics comes into play at all but believe you me, say the words Manolo Blahnik and you can take both feet, no questions asked. Try having a penchant for fashion without being able to express it on your feet. It's like waving scotch in front of a recovering alcoholic.

Right now, the NO tally has many more checkmarks, and my doctor has emphasized that he knows it is a big decision and that it's mine to make. For one thing, I already exert more energy than the average person to get around. I won't know how much energy I will have to exert after amputation until I cross that bridge-if I ever do. For another, I've already lived with these conditions longer than I've lived without them and with each new doctor I meet, their words are always that I'm in "better condition than I should be given my situation". I'm always being told how things COULD have gone, rather than how they have. Taking care of my health has not always been at the top of my list, so I realize that this is a major streak of luck. However, playing my game by my rules has served me thus far. Who's to say that I won't get another 30 years out of this foot? Because I haven't yet met a medical Nostradamus, I'm willing to take the "risk" of my status quo. Finally, where surgery is involved my body doesn't seem to like to play by any rules at all. The doctor could tell me how the procedure and recovery will go, but there is no promise that this is how it will play out for me. In fact out of 12 surgeries, I can think of approximately zero that left me without other things to deal with. As it is I'm just bracing myself for tomorrow.

As is my surgery ritual, I'm making a list of terms to give to the surgeon before we begin tomorrow: that I am not staying off of this foot and that I will be going to Houston as planned in two weeks. No anesthesia unless absolutely necessary. Because refusing anesthesia seems like a normal thing to do, right? My mother likes to recall how she would be weepy in the waiting room as they wheeled me into each surgery when I was a child, but that she could hear me barking orders all the way into the operating room. I guess times haven't changed. Hey, if a kid tells you to leave the pain medication button off of the IV, leave it off. Sometimes well-meaning moms press it in the middle of the night and you're left wide awake with a stinging hand.

It is impossible for me (or likely anyone else in my family) to read this without thinking of my great Aunt Doris. Osteomyelitis was one of the many thing she struggled with growing up, so I had that in common with her. Multiple surgeries, hospital stays that stretched into months, and two parents who, for some unknown reason, refused amputation at a time when doctors were rarely questioned. As a result, she turned into a 4'10" powerhouse who practiced holistic medicine and died in her 80s with all ten fingers and toes attached. I don't often have the luxury of looking to others to see how my situation might go...it's always a crapshoot. But she wasn't just somebody else. She was the person who taught me that the power to make my own medical decisions was indeed mine, and that there are more options than the ones presented to me. I might not ever be able to eschew refined sugars and poultry or any of the other extreme things that she did for her health, but whenever I make a decision that benefits my health I know it is because she empowered me (and many others in my family). She is definitely a guiding force each time I mull over these types of decisions.

I don't believe it was any coincidence that a gift from her presented itself on my doorstep this week. My great Aunt Peggy (her sister) had found a book with my name on it (written in her handwriting) among her belongings after she died a few years ago that she had meant to send to me, but never did. It was a book in German that she had likely picked up for me when I was studying it as a minor in college. To have something from Aunt Doris show up this week was a Godsend. To have it be an item that speaks to who I am, a wanderer, at a time when I really want to run but don't have the ability gives me hope. Between that and having to undergo just one more thing at a time when my patience is at capacity, I've already started planning another adventure. My life feels a little like quicksand: I have to keep moving, or else I am doomed.

Today, my toes are mine. I plan on keeping them for as long as I want them. I'm already slow enough, so I refuse to "slow down". My motto about my legs has always been run them down to stumps. 

Friends Don't Let Friends Shoot Up Alone // On Being Sick in Palo Alto

Pratik was out of town at a conference last week. He offered to cancel due to my PICC line, but I insisted he keep his plans. I'm determined to do my own treatment, much as I hate it. I was really upset when I had to call him from work due to Faint Gate 2014, so I was insistent that he attend the conference as planned. (Plus, Hillary Clinton was the keynote speaker. He loves the Clintons, and I couldn't let him miss that.) His work is important to him. I don't feel like I come in second to it, but I do know that his work/company/passion is equally as important to me. I'm ever the independent one- I'm not bothered by his long hours and attachment to technology. Something I appreciate about our relationship is that we both value not only our own independence, but we value each other's independence. We like to see each other thrive in our own interests (for lack of a better word. Hope this doesn't turn into the time I told him I liked to watch him "tinker" at the lab during his PhD studies...apparently not a great choice of phrase).

Due to The Fainting Incident, we asked our good friends C+E to be on standby in case of emergency. I was still confident that despite the incident, I could carry on doing treatment myself. However, I just wanted to make sure someone knew they might receive a "hey, I fainted" phone call.

Our friends went above and beyond--they called every day, provided me with dinner (and chocolate) twice, and even let me shoot up at their house in the dining room window in full view of the neighborhood. Friends don't let friends shoot up alone.  They really went out of their way to check in on me. Really, I shouldn't be surprised...it's the kind of people they are. They aren't satisfied with a simple phone call to make sure you're not unconscious on the floor. They want to know you're alive AND well. They want to make sure you've got a meal and that you're in good health. I don't often "take the help", but I'm trying to do so before I corner myself into another situation. If there's anyone that can make you feel at ease about accepting help, it would be C+E.

What I love most about them (always have) is their tongue-in-cheek attitude about Palo Alto. They were the first permanent residents of this town that I got to know well, and they completely acknowledge and embrace PA's wackiness. When I first moved here, I felt out of place. (When you're living in an apartment a mile away from the home of Steve Jobs and parking your 1999 vehicle next to a Maserati, it's impossible to ignore how surreal the situation is.) Ironic, because I never felt like I fit in in my own hometown. I fled to California because I'd always felt it was where I'd belong. In moving to Palo Alto, however, I quickly began to feel out of place again. I wasn't quite sure how I'd traversed my life to get from rural Michigan to here but I was certain that, despite being well-traveled, I had "fraud" written all over my face and that this writing was only visible to Palo Alto's elite. The feeling wasn't totally based on our own socioeconomics. It was more that blatant wealth combined with being a hub for some of the world's greatest innovators has created a culture more foreign to me than any I'd ever experienced abroad.

Because of C+E's acknowledgement of the "surreal life" of Palo Alto, I began to realize that not everyone lives in the bubble. I loved the way they described raising their kids here, avoiding the entitlement pitfalls that come with the territory of one's high school being adjacent to Stanford campus. I loved the way they embraced who their kids really are and didn't make them fit into the same Silicon Valley mould many parents here seem intent on shaping their kids with. I loved their hilarious tales about how their neighborhood has evolved over the years, and most of all I love that they flat out say: this town is weird. And they don't just stop at saying it: E details Palo Alto's wackiest news stories and police blotter blurbs in their yearly family newsletter. I credit them with helping me feel at home here. It seems that this is a place for my brand of weird, too.

There's more to the Silicon Valley than being the epicenter for the shit you see on the news...there's the rest of us that have to live in its wake. We think it's effed up, too. Yesterday I was passed by a Ferrari. While it may never cease to be surreal seeing such a thing of material beauty up close, I was at peace with it. I may be accustomed to doing the passing (after all, you can overtake a John Deere in pretty much anything with a gas pedal), but I was at peace with letting the Ferrari get ahead of me. Because my 2011 Mini Cooper and I live here, too.

California has been so good for my health. I kiss the ground of the land of the fruit and nuts because not only is it thawed (everyday!), it doesn't pose a threat to me as I walk. I no longer have shooting pains in my leg from the cold air and a tensed gait as I ease my way across the ice. Even though I dreamed of ending up here, I am still bewildered that it came true. Bewildered, but eternally grateful. The weather lets me maintain my independence. I may feel like I belong here because I elbowed my way in, but my legs are all the more appreciative that I did.

And after all, no matter where you live, there's always something screwy going on to judge the neighbors for. Am I right? And we all take turns being that neighbor...sometimes we're that neighbor with the Ferrari, and sometimes we're that neighbor in her pajamas teetering on a cane while trying to pick up dog crap in a plastic bag as IV tubes dangle out from under her PJ sleeve...


Thank you, C+E, for always being such great friends to us. Thank you for going above and beyond the call of duty last week. Thank you for making us feel at home here and for being like family. My experience here has been enriched because of the two of you. Thank you for being, as it was put, "the nice family".

And above all, thanks for the chocolate when all I expected was triage!

So Much for Bravery // Revocation of My Big Girl Panties

It should be noted that two posts ago, my plan was to stay in Michigan for 6 weeks of PICC line treatment. To make a long story short, that plan was aborted and I am currently home with my husband in California. Given that I am writing this with the sun pouring into my open patio door, I'm going to make a hashmark in the silver linings category.

My geography sets the stage for my telling of yesterday's adventure in misplaced bravery. My husband is self-employed and works for the company he founded, so he works very long hours. Because I've gone into this PICC line treatment with guns blazing, I was determined to both maintain my independent lifestyle and not burden him with the administration of my new routine. As I said, physical repulsion to the PICC line is really my only hurdle at this point. Because I knew that I was eventually able to take care of my last PICC line myself, even if only for a few weeks, I was confident that I could handle it myself this time.

Yesterday, my big girl panties were revoked and replaced by a pair of Underoos. 

On Tuesday I had gone over the home medication routine with my home nurse, who comes once a week. She taught me my new routine and made an appointment to see me next week, at which time she'll be changing the dressing over my PICC line. I was able to administer all of the meds myself as she watched and instructed me.

Yesterday while home alone, I took the meds out of the fridge as I made myself lunch. I let them come to room temperature as instructed and began setting up for my treatment after I ate. Like a modern moron, I even Instagrammed my setup. I began with the saline flush. This is when things started to go downhill.



I noticed an air bubble in the line of my IV. While I know this isn't a HUGE deal, and I know that I removed the air from my saline flush as instructed, I started to panic a little. I collected myself, and kept going with my treatment. I started to feel a little uneasy, so I did what any self respecting adult would do:

I called my mommy.

My mom was happy to talk me through the process even from 2,500 miles away. I knew I could do it, but I just felt like crying for no reason. And even though I wasn't crying, I still felt uneasy. I finished the saline flush as my mom and I were chatting and hooked up the antibiotics.

My particular medication comes in a syringe, rather than a bag, and has to be administered through the line over a 3-5 minute period. I administered some of the medication, still chatting away with my mom, but I still wasn't feeling better. The prickly sensation of nausea was still coming over me in small waves. Having fainted only twice in my life, doing so seemed a far-fetched prospect to me. Denying the possibility to myself was as important as denying it to the person sitting at the other end of the line. If I just keep talking and saying how ridiculous it is that I feel this way after already treating myself yesterday, I can get through this. As we chatted I thought to myself "I'm probably just going to throw up or something at some point..."

And that is when ground control lost connection with Major Tom...

The next thing I remember, I heard my mother's voice coming through saying "Lindsie...talk to me..." I remember not wanting to get up for school, until I realized I was face first on my kitchen table covered in sweat. A box of chive crackers came into view, and I declared that I'd just passed out (duh), a declaration made based on my false presumption that I had slipped out of consciousness in relative silence. According to my poor mother, I had moaned several times and sounded like I was in horrendous pain. Though I don't remember making such sounds (after all, trees falling in the forest don't make sounds...especially when they're ladies) I do remember asking for my husband, whom she got in contact with immediately. He was on his way to an important meeting and dropped everything to come check on me, with my mom on standby on the phone until he got there. How embarrassing.

I know that's what family is for. I know I would do the same for my family, given the circumstances. However, when you faint on the phone with your mom 2,500 miles away and call your husband away from an important business meeting because you couldn't handle a simple IV...you feel like a moron no matter what they tell you.

A few weeks ago when the wonderful Phillip Seymour Hoffman died, my family and I noted the ridiculousness of the media reports stating that he had died of an "apparent" drug overdose as he was found with a syringe in his arm. An awful way for such a talented man to go, to be sure, but wasn't the use of the word "apparent" overkill? "What else could it have been?" we scoffed. As I struggled to maintain consciousness as my mom and I waited for my husband to arrive, I briefly toyed with seeing if my upstairs neighbor (or any human, as my dog was quite oblivious to the situation) would sit with me, until I realized that a half-conscious, unshowered person with various tubes and syringes hanging off of her would probably be a frightening sight to an unsuspecting neighbor! I can only pray that no one looked through the window and saw the scene taking place in my dining room. As it turns out, a person slumped over and unconscious with stray syringes might not be in an "apparent" situation! Though I did always admire heroine chic in the 90s, it's safe to say that vasovagal responses, and cupcakes, stand in my way of achieving the look.

Today, I feel 80% confident that I can carry on. I feel grateful for the ability to see the humor in everything, even if this transfer habit gives me false confidence and stifles my anger. New plan of action? Wait until the husband gets home to do my meds...at least for a little while!

This isn't the worst thing in the world // My PICC Line

There is little you can do to me, medically speaking, that scares me.  IVs are probably the top of the list ranking even over injections (a breeze), dental work (bitch, please), and blood draws (temporary setback). So having to live with a PICC line for the next six weeks is not only daunting for me...I find it a downright disgusting prospect.

What's a PICC line? Quickly, so that I do not pass out while typing, PICC stands for peripherally inserted central catheter. (Gagging.) Basically, it's an IV that can be used for a longer period of time than a standard IV, and goes farther into the vein toward the heart for faster dispersal of medication. (Gagging and fidgeting my arm.) It is located on the inside of my left arm. The catheter hangs out of my arm 3 centimeters and is held in place with a stitch and covered by clear bandages. I have extensions on the catheter so that I am able to administer the medication myself. All of this is covered by a gauze arm cover in order to help protect it.

Why do I have it? Briefly, this is to combat a bone infection of the left foot. I had a PICC line 6 years ago to combat the same diagnosis in the right foot, and it was successful. Having the PICC line 6 years ago helped me be much less anxious about my current one. I knew what to expect, and in fact my medication regimen is far simpler than it was 6 years ago as it is being treated with a different antibiotic. While the doctor estimates I will be doing this PICC line for 6 weeks, my last one was nearly 3 months.

I had the PICC inserted on Tuesday. While I couldn't have watched the process even if I wanted to (the view was blocked by a blue sterile cloth), I can tell you that any pain or discomfort I have or had with the process is 90% mental. I have terrible veins, but because they used an ultrasound to locate a viable vein, they did not have to poke me repeatedly as they normally do. I was given a few injections of local anesthetic, but I cannot tell you exactly how many as it wasn't even a big deal. (I think 2?) In fact, other than inserting the catheter and stitching it down, I cannot tell you much else that went down. There were other small things, like stretching the skin slightly to make sure that the opening was large enough for the catheter, but for as awful as it sounds I barely remember it.

Do good writers relay every small detail with colorful descriptions? Yes. However, I was breathing and meditating my way through this entire process. As I said, this was 90% mental anxiety, 10% physical discomfort. (I wouldn't even call it pain.) Anything to do with veins positively revolts me. That being said, I have moved, shifted, swallowed, and taken many deep breaths just trying to write what I have thus far. My biggest problem is that I'm grossed out.

I have two mental hurdles with this PICC line, and one was getting it placed. Now that that's over, my next battle over the next six weeks is repulsion. With my first PICC line, I was repulsed to the point of barely moving my arm for several weeks and had difficulty sleeping. My first experience equipped me with a better frame of reference: I knew that I eventually got used to (as much as I could) my last line. I knew that during the last few weeks of treatment, I was able to finally administer the meds myself. (My husband did them EVERY DAY for nearly 3 months for me because I could hardly stand to look at it, let alone move.) This time, I hit the ground running: I met with the home nurse solo in order to learn how to administer the meds myself. Success.

I think about the actual problem very little. As with most things, this is probably a mixed blessing. Because I am so mentally preoccupied with being revolted by this setup in my arm, I'm hardly worried about healing. This is probably because 'healing' is a relative term for me. I'll never be 'NORMAL' (everyone's favorite word). I only get to swing for the fences of normal (harder than most people do) and hope that I'm actually playing baseball because it looks like there's a ball coming my way. (OMG, this is my first sports analogy.) And then once we figure out what sport I'm playing, I'm the alternate on the bench of NORMAL. This is my medical calling. And I'm only slightly less angry about it than I used to be. That's a start. 

I have no feeling (neuropathy) in my feet, so I am luckily not plagued with physical pain. (Another mixed blessing.) For this reason, I bow down to anyone who has dealt with BIGGER medical issues. Is it helpful to remind people enduring medical issues that other people have bigger problems, so they should be grateful for the ones they have? No. However, this is a realization I came to myself for this particular issue. There are worse things I could be dealing with. And people enduring those issues look to someone else and think about how their own situations could be worse, and thus the cycle continues. When we come to this thought process ourselves the empathy helps us endure. Perhaps this is slightly selfish, but anyone going through medical drudgery would wish it upon very few people. If someone can look at me and feel better about that root canal they have next week, more power to them, because I'm thanking my lucky stars I'm not enduring the chemo the other patients in the infusion center were getting. I don't get a gold star of martyrdom for feeling for them, I am in their debt that their burden made mine look simple.

We all have problems, and this is mine. And this isn't the worst thing in the world. You could compare it to some issues and it could look extreme, while it could look minuscule in comparison to the plight of someone else. Either thank your lucky stars you're not me today, or scoff at my adversity. Today, I'm feeling a bit better than I was in my last post. But that won't stop me from medicating with cupcakes and retail, nor does it guarantee I will maintain this relatively positive attitude.

Health & Beauty // When Health is Poor

Things are decidedly unglamorous in my life at the moment. While good bloggers manage to have streamlined (and, you know, new) content and themes to their blogs, I'm about to get a little rogue with my own. It's my blog and I'll go rogue if I want to. We'll just file it under "Poor Health & Beauty".

To condense over 30 years of health history into a sentence: I have a form of spina bifida that inhibits my mobility and has caused several "side effects" that have become greater problems than the actual SB. Currently, I am dealing with another round of bone infection (osteomyelitis) in my left foot, which got into my foot via a 25 year old open ulcer on the bottom of my foot. Which was caused by a cast that I had on after a leg surgery when I was 7. A leg surgery that was necessary because of the SB. This is generally how my biggest problems occur: the snowball method. 

In the past, I was very hesitant to discuss my medical issues with people. Of course, most of this occurred during the formative years where "blending in" was the main mode of survival. Gimpy kids don't get the benefit of blending in. My next survival method was silence. I only discussed my health problems with a small group of close friends. (People I still call friends today.)

I used to be embarrassed about my issues. I also was afraid of "oversharing" or people thinking I was a hypochondriac. Perhaps the Facebook age of oversharing has cured me of this. Perhaps it is becoming a bit "older & wiser" that has made me want to open up. I could say that I want to open up in the event that it helps "just one person", but at this point that one person is just me. I am hoping for some healing and outlet through sharing on the journey I am about to embark on. And if I can cough out a post or 2 on lipstick to keep this ship of dreams alive, we'll be all the more glamorous for it.

While this is not my first time at the osteomyelitis rodeo, this marks the second time in which I will be getting treatment via a PICC line. This IV port will be in my arm for 6 weeks so that I can receive fluid antibiotics in hopes that it will rid the bone of infection. The first time I had this done (for my right foot) was successful. My hope is that my experience will be similar, though my benchmark of "normal" is not the same as the average person.
The side effects of just maintaining the current infection are numerous: other sites become infected, oral antibiotics give nasty side effects, and the topper: a piece of bone broke off of my metatarsal and shot out of my foot ulcer like a cannonball. It currently lives in a Ziploc bag. (To answer your question: I am fucking serious.)
To complicate matters, I am currently visiting my mother in my home state of Michigan. While luckily I have a doctor here that has known me for several years, I make my home in California with my husband. Due to the severity of my symptoms (and the extreme severity of anxiety I am having), I made the difficult decision to stay in snowy Michigan for the six weeks of treatment. On the plus side, this will expedite the process as the hospital is small. The first available appointment I could have had with my doctor in California was next week, and that was no guarantee of getting the treatment started same day, if at all. (Isn't it just like a doctor to dink around questioning the orders of another doctor? At least, that was my previous experience!)
On the downside, of course, is the fact that I've left my husband and home in California behind. This is compounded by the fact that I have only been home for 3 days since Thanksgiving having spent 2 weeks in Taipei (an old haunt) and then to Michigan for Christmas. Because of the increasing difficulty with my foot, I put off going back to California twice because of my inability to board an airplane with an inflamed foot. The guilt I feel for leaving my home and family in California is that much greater as I spent so much time on myself in November and December. Complicating matters is everyone's friend: anxiety. Every time I think I have a plan in motion, I second guess myself. To be honest, the anxiety is more crippling than being crippled...
Yesterday I was brave. Today, I am running on fumes having had little sleep. Tomorrow I look forward to the arrival of my husband who will escort me to my PICC line insertion. I will do my best to stick with a plan and not let 55 plans run through my head (one of which includes running away to avoid treatment). But for now, I am exhausted, devastated, and though I hate to admit it, scared.
Today I am in: basket case mode.