Thursday, April 9, 2015

Just Ask

A sad fact you will eventually learn when you are coping with becoming disabled is that sometimes even other disabled people are full of judgement and bias.  I don't see it all the time, but often enough to never forget that it's out there. 

Here's a recent example:  as we were leaving a restaurant and getting into the car, a woman stood on the sidewalk in front of us, waiting while her husband sat in their car in the parking lot. He was waiting to take the handicap spot we were about to vacate.  This woman watched my husband load my wheelchair into the car while I got buckled up and turned it on.  From the driver seat, because I always drive.  No big deal, people watch us load our family in and out of the car all the time, and I often get weird looks about it that I try to ignore.  I get it. It's hard for people to understand why I need a wheelchair and a handicap parking spot if I can drive and stand up and take the few steps from the car to the chair and back again.  But this lady didn't stop with a questioning look or a confused look.  She stood there and glared at me, without looking away.  Unashamed, righteous loathing just streaming from her eyes right into me. 

When my husband finished loading the chair and got into the passenger seat, he and I made eye contact, and immediately we both knew that we both had seen the way she looked at me.  He said, "I almost walked up to her, right to her face, to bark at her whether there was anything she'd like to ask me about my wife's spinal cancer."

I breathed a sigh of relief.  Relief that he was ready to defend me but had opted not to create a public scene that I would have found embarrassing even if it was justified.  "I know what you mean," I said. "Apparently I'm not handicapped enough to earn a decal parking spot in her eyes, even though she can stand there for five minutes to glare at us, and her husband can obviously drive as well as I do."  

I backed out of our spot and drove away from there without speaking to them, but I couldn't stop thinking about it.  I'm tired of getting those glares, and the skeptical looks, and the dismissive eye-rolls.  "Maybe the answer to how this keeps happening is to become a kind of public spokesperson for myself.  Just get it out there and be obvious about it," I wondered while I got on the freeway.  "Put a sign on the back of the wheelchair that says something like 'Ask me how many times I've learned to walk' or 'Feel free to inquire about how EHE cancer affects my family.'  Maybe I need to just willingly explain it to people, wherever we go, and that will help them understand and maybe they'll donate to EHE research or something."

But it's a frightening prospect.  Am I really ready to take on being a public figure for something this big? Do I know enough to be a good ambassador for EHE patients? What about when I'm feeling shy or depressed and I just don't want to talk to strangers about it? What if explaining the outlook or prognosis of many EHE patients to strangers only serves to make my own children more afraid of what will become of their mother?  What if EHE patients who aren't disabled by their disease would rather have a different representative, someone less focused on life with a handicap and more fervent about early detection and experimental treatment options?  There are so many facets to this disease, it affects different patients in so many different ways, it seems unlikely that any one person could hope to represent EHE.

Thank goodness no one person needs to.  The EHE patient community is already out there, reaching out to strangers with EHE t-shirts and wristbands and fundraisers, spreading the word about the myriad challenges of EHE and drumming up public support for more research.  Bless their determined hearts!  So I remain free to maintain my primary focus on the disability side of my situation, working in my Homeowners' Association and my community and my greater metro area to promote better access and quality of service to handicapped citizens.  So allow me to take a moment to explain why I still need and make use of a wheelchair and handicapped parking.

Imagine that your spinal cord is an analog telephone line.  For you younger readers, that means it requires a physical cord to transmit a signal from point A to point B, unlike a Wi-Fi system where phone signals can be broadcast through the air without a cord or phone line.  In this analogy, data from all over your body such as temperature, position of your feet, whether your muscles are flexed or relaxed, whether the ground you stand on is even or bumpy, all of this data is transmitted from your nerve endings to your brain via the analog phone line in your spine.  

For most of you this phone line is in fantastic shape, it's well-insulated from weather and movement and provides excellent signal clarity, so that at all times your brain is self-aware of every necessary inch of you.  When you become imbalanced, your phone line allows for instantaneous communication from the brain to your limbs, and your arms and legs move almost immediately to correct your spatial positioning and prevent you from falling.  You can walk for miles, without ever worrying about a dropped call sending you sprawling face-first on the sidewalk.  And if you become too warm while you walk, your internal air conditioning system will automatically turn on, because your flawless phone line allows communication directly from your skin to your thermostat, which tells you to sweat. You could stand for hours, and your feet would shuffle around to keep you comfortable, your back would request an occasional stretch and change in position, but you could go right on standing all the while.  

The difference between most of you and me is that my phone line is damaged.  In some places the copper wiring is exposed, and the signal strength is not 100% reliable.  So I get dropped calls, in other words, my legs sometimes buckle, and my thermostat can't always talk to the rest of my body. If I stand up too quickly, triggering a little chiropractic-style "pop" in my lower back, I get a dropped call. If my kneecap pops while I'm walking, or my ankle or hip, I get a dropped call. I can only stand for a few minutes at a time, before my leg muscles get fatigued and start thinking about dropping my call. If I close my eyes or try to look around too much, such as trying to maintain eye contact with someone I'm talking to while walking or standing, I often lose my balance and risk having a dropped call. If I get too hot, my thermostat can't get in touch with my air conditioner, so I don't start sweating in time to maintain a comfortable, safe internal temperature. If I get too cold, which happens when it's only as cool as 50-60 degrees Fahrenheit, the signal from my feet to my brain is not strong enough to convince my brain that my feet are still there, and my brain will shut down circulation to my lower legs as if I were in desperate, freezing conditions, sacrificing my feet and toes to hypothermia if I don't take steps to artificially warm them.

I take a lot of precautions to prevent dropped calls.  Because when your phone line is as damaged and exposed as mine, the potential injury from a fall could be catastrophic. If I actually fell down, the impact could grab everything I've worked so hard to regain and take it all away again.  So I don't take big risks. I don't try to walk all the way in to a fast-food restaurant from the car, stand in line to place my order, and then walk all the way to a table to sit down.  I park up front in the handicap spot and bring my wheelchair in with me, saving my energy in case I need to do something really difficult and energy-consuming, like make a trip to the public restroom.  

So when you see me driving or taking a few steps to get in and out of my car, and you're left wondering why I deserve to carry a disability placard and park up front, just ask.  Stop glaring at me like you think I'm scamming the system somehow, or that I'm only sitting in a wheelchair because I'm fat and lazy.  JUST ASK.  I'll be happy to tell you all about it.

Monday, January 19, 2015

Not Alone

If I haven't already told you about seeking out social network connections to learn about and cope with your disability and/or serious illness, I need to do it now.  Going through a traumatic medical ordeal can be isolating and overwhelming, but finding a community of others surviving similar circumstances can bring hope, comfort, and even vital information that could help your own healthcare team.  

One especially isolating factor for me has been the sheer rarity of this particular type of cancer.  At less than 1% of all cancer diagnoses, it's easy to feel like there's no one out there who even knows enough about it to give you a fighting chance.  Fortunately, there is a Facebook group for patients and family members with Epithelioid Hemangioendothelioma, and if there's one for such a rare disease as this, there's probably a group or many groups for you, too.  

The group has been absolutely invaluable to so many of its members.  In that community we finally find people sharing similar experiences, fears, and treatments to us.  Perhaps most importantly, in that community we are finally able to compile real data from actual EHE patients to help inexperienced patients and their sometimes equally inexperienced oncologists develop a treatment plan with the best possible chances of success, and actively help researchers who are trying to understand the underlying cause and many different ways this disease presents.

If you have been diagnosed with a serious medical condition, are injured and/or disabled, I strongly encourage you to seek out your own group of similar individuals for support.  You must always be mindful, however.  Be careful to protect your most personal and confidential data, remember that no matter how similar, no two medical situations are ever exactly the same, and don't allow yourself to be completely overwhelmed in the deluge of information you will receive from other patients and supporters.  Read with skepticism and critical thinking, and above all use the information to create meaningful and thorough dialog with your healthcare team - no amount of accurate anecdotal evidence from others can replace the importance of clear, detailed communication with your own doctors.  

Used properly, a patient community can be a precious resource for treatment ideas, understanding, empathy, ties to financial and transportation assistance, and to finally not feel so alone in what you're going through.  I hope you seek that camaraderie in your preferred social venues, be they online, faith-based, etc.

You can find the EHE group at https://www.facebook.com/groups/EHEcancer/

Thursday, January 15, 2015

Signs

My husband and I have long joked that I need to wear a sign like the one in the movie 28 Days, "Confront me if I do not ask for help."  It's an acknowledgement of my stubborn ways and the fact that I sometimes make things harder for myself by being too intent on doing something on my own without help.  

Lately I'm becoming aware of another warning I might need to wear, similar to the defiant threat from the babysitter in Adventures in Babysitting:  "Don't f*** with the babysitter."  Don't mess with me. I do not play around, I mean serious business and I generally do not consider losing an option. 

Forget about all the struggle of the past four years to diagnose, treat, and overcome medical problems of life-changing proportions; this was a character trait from the very beginning I think.  I've never dealt well with being told something was impossible or too hard or not for girls or any other artificial limitations.  I'm the little girl who jumped off 5ft boulders and flapped her arms trying to fly, almost every day. For years. (R. Kelly had nothing on the amount of belief in me.)  

This tenacity has manifested in a variety of ways in my working and private life.  For example, I'm terrific at finding things.  All sorts of lost things.  "The such-and-such file folder is missing; no one can find it."  Oh yes I can. Watch me.  I have a fairly good eye for detail and an uncanny ability to remember where I've last seen something, be it a physical or a digital file.

Sometimes it manifests in direct conflicts with people.  When confronted with the shocking financial betrayal of a colleague, for example, I relentlessly directed my finding skills at tracking down every possible byte of data that could assist in bringing the perpetrator to justice.  (You do NOT want to give me a reason to internet stalk you.)  When my eventual husband's ex-girlfriend attempted to wheedle her way back into his life with emotionally abusive ploys like how depressed she was now that he had moved on to long-distance dating me, I didn't waste much time on useless sympathy.  I attempted to treat her in a cordial and friendly manner, but when she declared that her life was meaningless and included key phrases about being home alone and having available methods to harm herself, you bet your life I did what any trained peer counselor would do: despite being states away, I called her local police to respond to her potential suicide attempt.

So when a local healthcare provider who has never treated me left one practice to start another, and took the entire patient contact database from one site to the next, then used it in a reprehensible email spam campaign to recruit patients for experimental weight loss procedures, I was certainly annoyed by this rather unethical use of my patient data.  I could've just deleted the spam, I suppose, but that's just not my style.  I contacted the new office to determine how they got my data, and when I heard about how he took it from one practice to the next, even patients he'd never seen, I went ahead and contacted his former practice to make them aware of the extent of his data transfer and the nature in which he was employing it currently.  They were shocked to hear of his activities and very glad to be made aware of it.  But even if they hadn't been interested in the breach, my proverbial horns were sharp and ready to address the offending party myself if needed.

If you don't want to dance with the bull, don't wear red to the arena.

Friday, December 5, 2014

MRIday

It's not Friday. It's MRIday. 

Get it?  I crack myself up.

I did it again, did you get that one too?  I crack myself up, like I cracked my own spine from the inside a few years ago? 

This is the humor you get when I'm on a cocktail of Hydrocodone, Valium, Flexeril, and Baclofen.  You'll have to excuse me.


This morning I spent nearly two hours with my old nemesis, the MRI scanner.  I'm so stinking proud of myself for how I handled it that I could hardly wait to come home and tell everyone about it.  It was that good, really.  

They had Pandora so I could listen to music I specifically liked (thank you Imagine Dragons channel!) and did the best they could to make me comfortable on the super hard table, and did a really excellent job of preparing me for each step of the process and being honest about how long it would take to get all the pictures they need of both my cervical and thoracic spine. 

I was praised for doing well at each stage of the process and given lots of encouragement.  And then, much sooner than I thought, it was all finished, and I hadn't ever panicked or freaked out.  Not truly sooner, it really was almost two hours, but it hadn't felt like two hours.  The pain had been bearable.  The heat had been too warm, but not stifling.  I was very relieved when it was over, but not weeping and gasping.  It was as different from past MRI experiences as it could possibly be.

As usual, I'm hoping to learn nothing from today's images. Nothing at all. Not finding any reason for why I'm in terrible pain is better than almost all the actual answers to why I'm in terrible pain. When they look at my tumor and my spine and my ribs and shoulders and wherever else they go hunting for culprits, I hope they see nothing.  Then we can relax, and say this is probably just nerves regenerating and awakening, and after a few weeks of intense, searing pain, they should eventually calm down and behave.

This afternoon, I'm rewarding myself with a sandwich from IHOP for lunch, and recovering by spending my afternoon in my cozy bed with a little cup of M&M's and my husband providing a neverending refill service on my ice water to help my kidneys process the contrast dye out of my system.  I'm so fortunate to have him to help take care of me.  Here's to a well-earned rainy afternoon nap!

Tuesday, November 4, 2014

Failing

My son was frustrated about his PE class today.  "They asked us to do like, 17 different things and I was only able to do FOUR of them, Mom," he grumbled.

I gently prodded him with questions to get more of the story.  They apparently attempted a variety of gymnastic-style activities like forward tumbling and cartwheels and backward rolling and hands-free back-flips or some such things.  

I said, "I think only trained gymnasts can do most of those things, I'm not upset that you couldn't do them, but like your teachers, I just want you to give your best effort and try new things."

He was still surly. "Well next time they should pick some things that people can actually do!"

I struggled to keep my voice from breaking, because I've been in his shoes, and long before a "legitimate" reason cut short my physical potential.  I barely managed cartwheels as a little kid, and never got the hang of tumbling, because my neck and head refused to tuck properly.  And I was far too chubby far too early to ever do things like back flips and hands-free cartwheels.  

"Well son, to tell you the truth, it's not a bad thing that they picked a bunch of stuff you don't know how to do.  We need to learn how to fail in life.  It's as important as succeeding, maybe more.  Can you imagine what I'd do if I woke up unable to stand or walk and had never ever failed at anything before?  That would just about be one of the most devastating things that could ever happen to me!"

Bubby watched me, guarded, waiting to see what sort of story or point I was trying to make before committing emotions.  This is touchy ground for both of us; he has seen so much suffering and struggle in the past three years.  

"Luckily," I said, with a little smile, "I've had lots of practice at failing things.  Sure, it was still very very hard, but I was familiar with failing.  I could let go of standing and walking for awhile, and focus on something else, something reachable.  Like putting on my danged socks and shoes with those silly sock tools.  It was so frustrating, taking 30 minutes to put on a sock and shoe!  But it was possible, and doing things like that got me through while I kept failing at big things like standing and walking, until eventually I quit failing."

I could see the tension slipping away from his face, the smile trying to come out.  "So as long as you tried, I don't care if you can't do gymnasticky things.  I like the things you CAN do, like geology and dinosaurs and complaining about how solving for area only takes you 5 seconds."  He giggled and I rubbed his buzzcut head, then rubbed it again because it feels nifty when his hair is short like that, and he laughed some more.  

You can learn a lot of important things about life by failing.  Not the least of which is how to get over it.