I’m Not Here to Inspire You

The character Morpheus from The Matrix with a copation that reads, "What ifI told you that when you tell me you thought you were having a bad day, but then thought of me and realized my life is not so bad" Do you know that you are not helping?

Disability and illness are cruel, but having them does not make an individual special. This may not be a popular opinion, but it is mine. Since I have both disabilities and chronic illnesses, I will take the floor.

I have been called brave, a warrior, or described as “suffering”. I have had great difficulty helping people understand why these terms are used a little fast and loose for my taste.

I’m told often how courageous and brave people think I am. Really? I’m not brave because I live with an illness and disabilities. What’s the alternative? I’ve said it in prior posts that living with obstacles doesn’t make me brave; it just means I’m not dead. Being not dead is certainly a reason to celebrate, but it doesn’t make me brave. I’ve had conversations with people who say to me, “I was having a bad day, until I thought of you. I know that no matter how bad my day is, it couldn’t be as bad as yours. I have no reason to complain, your life sucks compared to mine. I mean really, I don’t know how you get out of bed every morning to face the day. I would probably kill myself if I were you.” (Every one of those statements have been said to me.)

Everyone should be able to have a bad day, and not feel guilty about it. On the surface, maybe “my life is not as bad as yours”, may sound like a compliment, or that your validating their struggle. No. That’s like saying, “My life is okay, but yours- it’s really bad. Oh my God, you have a terrible life. I am so happy not to be you. I feel so much better now, because my life could be so much worse!”

Having a disability or illness does not mean that my life sucks. Look, I would never say my illness is a gift. That’s stupid. But yes, my life is good. I am rare because I receive veterans disability benefits in addition to ordinary disability benefits. To be quite honest, I don’t know if I would have lived so long without it. Back before it was against the law to discriminate against pre-existing conditions, (and even now) patients who need specialized doctors outside their network of care will die prematurely because their budget doesn’t afford them the luxury to pay the out of pocket network co-pay, and/or non-formulary medication. The United State citizens fear terrorist attacks more than people dying from lack of needed specialized care and prevention. You know what’s frightening? The comparison of Americans who have died from terrorist attacks vs citizens dying due to lack of medical care. Citizens of our country think it’s okay to call people on disability lazy, and denying coverage because some a**hole commits fraud. And yes, there are things in place that prevent a disabled person from supplementing their income. Because if they do, and it gets over between $500-$800, they loose their benefits and suddenly it’s no longer supplemental. So when illnesses flare and they don’t have the resources to pay co-pays for specialists and medication. Suddenly, they’re worrying about rent and food. And don’t get me started on pain management. It has nothing to do with pain and everything to do with preventing addiction. We force people to wait months at a time to see pain specialists because doctors have restricted abilities to prescribe pain medication. Yes, addiction has to be in the equation somehow, but thanks to a generation of medical breakthroughs, but lack of access to treatment due to income made handing out pain medication like M&Ms a preferred treatment. I once paid $5.00 for a prescription for percocet and $50 for the antibiotic to cure the problem. If I had to choose between food for my kid or medication until payday, I’d hang in there with the Vicodin until payday. Now, the stigma of pain medication has become so bad, people will walk around in excruciating pain, than risk being labeled an addict. This is why people listen to Jenny McCarty and Food Babes of the world. They promise them health because in the past, treatment was not available.

We are so dumb as a species.

Wait, what were we talking about?

Using terms like brave, etc… People have asked me how I’m doing, and instead of embracing the exciting things I share with them, I will get, “Oh Karen, you are so brave. You don’t need to be brave for me. How do you really feel?”

I have been complimented on my strength to get out of bed and dress myself. I’ve been give credit for just showing up. People show up, every damn day.

I hate being called a scleroderma warrior. I am not at war with my body. I’m trying to make it strong and healthy. I want the organs of my body to work together so I can go out and do things. I think that makes me a negotiator, not a warrior. My body is not at war. My body is negotiating peace with factions who disagree with one another. It takes time, patience and work, but we all do it. As we age, we do things to prevent high blood pressure and diabetes. We stop eating fiend foods because our metabolism slows down. The things I do to stay healthy, are the same as anyone else. Sure, some the medications are different, but the intent is the same: We’re negotiating for more time on earth. We’re giving in to concessions like taking medication and avoiding chili dogs, to live longer. I don’t know about you guys, but I’m 45 and I am working to get at least another 50 years.

When people ask how I’m doing, I will tell them I feel good, and they won’t believe me. They’ll reply with statements like: ‘Oh you must really suffer”; “I know you’re suffering”. Are they listening? No.

I could say, “Today, I won the lottery, had sex with Chris Hemsworth and instead of breaking up, my boyfriend congratulated me.” And I bet I would still get, “Oh, you are so brave. I just don’t know how you do it.”

I have shared a video in this post of a TED Talk featuring Stella Young. She nails it. Please watch. She is far more entertaining than this post.

Yoga with My 87 Year-Old Aunt Is Awesome!

I had a fantastic holiday weekend.  I hung out at my aunt’s house in Lancaster for four days with my Aunt Carmen, and ,cousin Karen (yes, she is my namesake.)

I have always looked up to my cousin Karen.  The first time I visited her home in San Jose as an adult, was in the 1990’s.  It was surreal for me to be doing grown up fun things like drinking margaritas, and laughing until the late hours of the morning. with her  Karen is actually my dad’s first cousin, she was an adult when I was born, but the years did not keep me from somehow inheriting  a lot of her personality traits.  The good, the bad,  and the crazy.   This past Saturday night together, we laughed because back in 1995, we were drinking tequila shots at 11:30pm, and this time at 11:30 pm on a Saturday night,  she was removing a knife I had lodged in a Granny Smith Apple.

We spent three days lounging and visiting while  watching CSI Miami.  I had never seen CSI Miami before, and  my favorite part is the beginning of the show.    Horatio (David Caruso) begins a comment, puts on his sunglasses, makes a potentially  profound statement about his comment, followed by the primal scream in the show’s theme song, “Won’t Get Fooled Again”, by The Who.   I wish I could find a way to have the scream cued up and play, every time I put on my sunglasses.  *sigh*

During my research of Horatio’s sunglasses, I stumbled upon the top 10 Jason Statham moments on YouTube. The only thing better than a Jason Statham fight, is a Jason Statham fight when he’s wearing only boxers.

What were we talking about?  Oh yeah, Yoga… with my Aunt Carmen {puts on sunglasses and walks away.}

That Monday morning following the  relaxing weekend, my aunt and cousin invited me to join them on their adventures, which turned out to be a healthy routine I envied.   At 9am,  I found myself in a senior citizen’s stretch class with my cousin Karen.

Click to see the clips… They only gets funnier  

Last year at this time, I was doing Krav Maga classes.  That 45 day hospital stay really took a toll on me and now, I’m easing into activity.  Last year, I would have punched you in the neck, Jason Statham-style, if you told me I’d be in a stretching class for seniors.  Stretching is stretching and these seniors had a great program that would give a few 20-year-old I know, a run for their money.  I have always looked up to my cousin Karen.  This was the first exercise class we had ever been to together, and I was happy she invited me to go along.

About 15 minutes into the class, not only did I realize I was probably the only person wearing thong panties, I became acutely aware of how inspired I was by my fellow students in the class.  My biggest fear in the early years of my diagnosis was that I may not live to be a senior citizen.  Today, this rag-tag group of perky seniors gave me hope.

There are many things I have resented about having a progressive, degenerative illness at a young age.  I missed 7 years of my 20’s and spent all of my 30’s in doctor’s offices, hospitals and physical therapy rehab office visits.  But, I lived to tell about it.  Now I’m in my 40’s and I feel like I have my whole life ahead of me. I miss my 20 year old body, I’m not the first person in her 20’s to be ill and I certainly won’t be the last. And today,  there I was stretching with some old people and felt comforted that there was something I could do about my health. The students in this stretching class really stoked the fires of my inner control freak, and it was a great feeling.

There were cancer survivors, a 92 year-old women who still drove herself to the Senor Center every day, and there was my awesome cousin working hard to keep herself healthy, and able.  This health thing does not happen by sitting around.  You have got to get out and leave, especially when it’s hard.

Recently, my Aunt Carmen was unable to walk because her muscles had atrophied as a side effect of some medication.  She spent some time in a rehabilitation facility, where she learned to walk again.  When she returned home, she didn’t want to go anywhere, but my cousin Karen, got her moving.  It would take lots of convincing to get my Aunt Carmen in the car, but luckily, my cousin Karen is very stubborn and wouldn’t take”no” for an answer. When they would return, my aunt felt significantly better.   Now, these two have a great thing going on every day- and today, I had the privilege to join them on their Go-Go-Go! adventures.

After walking our dogs in the park and stretch class with my cousin, we ran back to the house to pick up my aunt for chair yoga at their local wellness center.  By the way, these activities are free to them, thanks to Medicare.  When we arrived, well- my cousin Karen has this amazing outgoing personality and of course, she gets that from her mom.  These two just light up a room.  I hadn’t seen my aunt this active in ages.  She introduced me to her friends, showed me around and then we took our chairs in the activity room.

 

We did some Thai Chi, then sat down on metal folding chairs with big comfy cushions.  Chair yoga gave me quite a work out and I felt so relaxed after.  The best part, was doing chair yoga with my 87 year old aunt and my cousin (who would kill me slowly and painfully, if I disclosed her age).  Three generations doing yoga together, so we could all be together, longer.  You’d think I would have taken a picture, but no- we were just to busy enjoying ourselves. And you know what?  I almost did not go to visit my aunt and my cousin, because I didn’t feel well.  I haven’t been as active as I used to and I get tired easier.  Or at least I used to.  Hanging out with my Aunt Carmen and my cousin Karen, was just the kick in the pants I needed.

So, if you have scleroderma, sarcoidosis or any debilitating disease, and you turn down an offer to go somewhere and do something, please reconsider.    It is hard not to be discouraged by pain.  And things will not always go as planned  It may be hard to get out.  It may be hard to move when you get there, but don’t pass up an opportunity.  You may be sore when you get home, and have to rest, but getting out is worth it. Life moves pretty fast.  Don’t miss it.

Editing note:  I originally published this post spelling Tai Chi, Thai Chi.  I left it, because it’s funny.  ~K

 

You’re welcome.