Month: May 2017

Today is the two-week mark on doubling my dosage of the dreaded meds. The last 2 weeks were not torture, but I did experience joint pain, dizziness, nausea, fatigue and night terrors. Yes, I did expect it to be worse. I am only at 1/20^th of the recommended dosage so I know I have a bumpy road ahead. But I already knew this, before I even began. Being a person with a sensitive system to all drugs, including seemingly harmless ones such as Novocain at the dentist, I anticipated some undesirable reactions; but some in particular bother me the most. Death, you may say? Maiming? Life-long maladies? Nope, I am worried about weight gain, bloating and hair loss. That doesn’t mean there aren’t menacing and painful side effects that I will not deal with, and I am prepared to face all of the side effects head-on, in order to improve my heart function. However, and with that said, my inner diva wants to draw an imaginary line in the sand where getting better means being ugly and fat. “Can we address the diva in the room, please!?” Where the hell did this chick come from anyway? I never knew I even had an inner diva, as I have always considered myself a humble person, yet here she is; and she is pissed and loud. Hmm, now that part I do recognize.

I can honestly say that I have never considered myself as vain. I grew up in a household of beautiful women, from my grandmother all the way to my youngest sister, and I accepted my place in the ladder of hierarchy of such things – mine being the bottom rung. My family never expressed that I was any different on the “Richter scale” of beauty from them, and I never really felt like less of a person because my outward beauty wasn’t as refined. It was just obvious. But, I was who I was, and they were who they were, and that was that. I don’t ever remember feeling jealousy, as I believed, then and now, that neither of us are any better than the other when it comes to the appearance of our outer shell. I still believe this is a healthy approach to the subject. We all look different and that is okay. Besides, I simply loved them, and how beautiful they were was inconsequential regarding my affection.

However, I never liked that I was heavier than every woman in my family: I still don’t. I have always struggled with my weight – fluctuating anywhere from a size 4 to a size 16, throughout my life. That was something that bothered me because the women in my family are very small and I stick out, like a huge pimple on the beautiful ass of life, in that regard. As I begin these meds, the scale hasn’t gone up, but I have noticed my waist feels expanded. This is in direct relation to what the drugs are supposed to do, which is to relax all muscle, including heart muscle so it can work less, which is the point with me, and that makes everything feel flabby and gross. I am hoping some exercise, after I feel “righted” on the meds, will combat some of the loose muscle feeling. The meds also cause edema and hair loss. It is just a big shit salad if you care about what you look like. Right, right…I hear you from within my computer screen, “But isn’t feeling better more important than looking good?” I assume “yes” is the correct answer, so I will go with “yes,” but with each day that my clothes are tighter, I have to reassess that answer again. I have a feeling that this struggle will be a daily determination of health over vanity; and this comes from someone who never considered themselves as vain to start with! And here I thought that I had already successfully traveled through the stage of grief, “acceptance” in my illness. It seems we are going to live within the stage “acceptance” for awhile more.

With my weight, much has been learned along the way in my 48 years of life. However, it was in my times as being thin that I learned the most; that I learned to not be so critical of my heavier self; to give my body the same borderless admiration and respect that I give my intellect and morals. Not that I will jump on the bandwagon of those who justify being overweight as “self-love.” Being overweight is unhealthy. Period. Self-love is about treating your mind AND body kindly. That means being healthy. If you are trying to convince yourself differently, you are just copping-out. However, liking one-self BECAUSE you are thin is just as unhealthy as hating yourself because you are fat. And the reverse side of that coin translates the same. One should like themselves because of who they are: their morals and convictions; their integrity; their motivation; where they find their grit and self-worth – all contribute to building inner strength. And believe it or not, that structure of strength is completely stable without considering what size pants you put on today. Your “worth” is completely determined by you.

I wonder what most people consider a “woman’s worth?” Is it her beauty only? Current society would say that a beautiful body and face is the most desirable trait a woman can have. And marketing strategies would sell the message that without this lipstick, botox, car, we cannot keep up with our desirable counterparts. In this climb to an unrealistic summit, many women, who value other attributes beyond all the hype of spending hours in a mirror, will be left behind: so much energy into something of so little value to the advancement of the human species. Now, this would have a completely different spin if we were to discuss the evolution of our species, and their method of choosing mates by comparing their genetic health. Simplified, a desirable mate would be one that looked healthy. That is it! Think about our standard of beauty now and how that would work in genetic profiling. An emaciated supermodel with low muscle density certainly would be discredited as sick, while a healthy-weight individual (probably considered overweight by our current standards) would be sought after.  So maybe health does trump beauty after all! Well, if we were all still Neanderthals anyway!

Many internal questions are brewing within me on what I consider my “worth” to be these days. It is a very complex question and mutates each time I approach it. I suspect, it is a question that will be answered over and over again throughout my life. But for me, today, and with this illness, I concede that it isn’t beauty at all, but I aspire to reach endurance: a quiet endurance in fact. This is not easy, as I have never been comfortable in quiet.

My appearance wasn’t all that made me different than the women in my family. I was boisterous, or as my grandmother would say, “Cheryl Ann! Too loud!” My grandmother, mother and sisters are all soft-spoken. That is one thing I have never been accused of. I began my adult life wanting to be heard; wanting to be that bull in the china shop and get shit done and take names – and for the most part, that is what I did; with an intense, borderline aggressive, personality. I found it earned me respect, or at least I thought that it did. But the real lesson on earning respect was there all along, with my soft-spoken maternal kinfolk. I only realize now, how much power is in soft-spoken words and how much bravery it takes to smile politely when you want to yell indignantly. The easy response is the knee-jerk one of rebuttal; of not taking shit and calling out an enemy; my “go-to” response. The harder “row to hoe” is the quiet endurance of a woman who cannot be lowered to such hyperbole. I am certain my grandmother, mother and sisters, have taken more bullshit than one person deserves, without ever saying a word. They had the fortitude to stay upright and calm. Unlike me, they are not comfortable in anger. Of all the enviable attributes my charming family holds, this is the one I am jealous of, and, the one I find most beautiful.

My new strategy regarding the drug acclimation is to take a path of “least resistance,” not as the stubborn bull that is me, but as the gentle stream carving a riverbed, that is them. The softer approach is awkward, but I am hoping that even if the side effects suck, that I can learn to cope with them in silence. My family has been through enough. Meanwhile, I am challenged to find my changing worth and strength in the quiet corners of this illness. I promise that I will smile politely, curtsy, and dance with the demons of drugs and self-doubt in the months to come. Please knock loudly if you need me, as the brutish demons are always “too loud!”

 

My family loves Disney World and Seaworld. We travel to Orlando, Florida, several times per year to get our “fix,” but this time was different for me. Within the magical walls of Disney, we have spent many vacations of happiness, and those vibrant memories call us back, over, and over again. I anticipated that this time we would have some adjustments, because of my current capacity of heart function, and we would just have to improvise along the way. I worried that I would not be able to keep up and that I would somehow ruin the time of my family; so, I compensated…well, I tried to.

Day 1 of our trip was at the Magic Kingdom Park. This is my favorite Park, but also, in my opinion, the hardest to navigate a wheelchair in, because the pathways to most areas are congested and many people just run into the chair.   This was tested earlier with two of my children having injuries, but on different occasions. It was decided that I would forego the wheelchair and “see how I would do.” If I were being honest, the walk just to get inside the gates of Magic Kingdom already had me winded. I told myself to just sit and take breaks a lot. This is easier said than done, because I didn’t want everyone else in my family to spend their time at a theme park just sitting. As usual, we split up with fast passes – Bryan and Aubrey to the roller coasters, and Ace and I, to slower rides. Ace was great, taking care to not walk too fast ahead of me and sitting when needed. He and I did some “long-sitting rides” such as Carousel of Progress, Small World and the People Mover. We meandered through some stores and then sat some more.

We met up with Bryan and Aubrey again for lunch (at Plaza restaurant which was awesome) and then more walking. After I eat is the worst times of day for me. I am weak and tired. I have been told it is because the blood is being routed to stomach for digestion and therefore, the heart has to work harder to keep up the blood volume for the rest of the body. For me this is a problem because my heart already works too hard, even at rest. Walking after lunch was very difficult. I felt like my legs were lead. I wanted a nap and my head was pounding. It was at this point I realized the decision to not get a wheelchair was probably a bad one. Wheelchair rental is at the front of the Park so turning back to get one wasn’t something I wanted to do either. So, I walked – with my heart beating out of my chest and my head swimming. I felt compelled to “carry-on.” I told myself I needed to for my family, so I didn’t ruin their day, or so that this trip was equivalent to previous trips in “worry-free” fun. But in hindsight, it really wasn’t about my family at all, as they were having a good time with, or without myself dragging along. It was about me, and the experience I would have at my “happy place.” I decided, before I even left my house, that Disney in a wheelchair wouldn’t be enjoyable; or at the very least, not the same. So I ran myself out. It didn’t take long before I was napping in a shaded corner on the ground. I simply could not do anything more without this rest. After about an hour, I felt like I could continue.  We left the Park at 5pm. I am uncertain whether the family would have stayed longer without my dragging-ass along.

 

The next day was Epcot, and I knew there was NO way I would be able to walk it all day; especially because that morning I had woken up to edema in my feet and ankles from walking too much the day before. Today, we would rent a wheelchair, much to my disdain.

So $12 later, we had this wheelchair; this symbol of inferior human status, that I was to display the fact that I was “lesser” than all the “abled-body” guests. As a person who advocates for disability rights, for a career and for my son, this may sound brash. But this is the gross truth – disabled people are viewed poorly, and is why they are the #1 discriminated minority worldwide. This fact burns me to my core and why I have been so vocal for their rights in the past. I now find myself in the position of looking through a keyhole at what the disabled community endures when it comes to society’s perception. I didn’t like it. So much so, that I refused to sit in that damn chair the entire day. I sat in the chair when long distances were ahead. Other times, we parked it. I had a choice to sit or not – that makes me lucky. Others aren’t so lucky.

While peeking through this “keyhole of disability,” I noticed who looked at me, and how they looked at me. Most the time, nobody really noticed me. I mean, my eyes are at their butts (which sucks) and so it was easy to look past me. I was invisible to most. This is a statement that is prevalent in the disabled community and I can see why. The ones who did look at me in the chair, mostly had an unfriendly gaze. I am not sure if they were assessing whether I had a disability and decided I didn’t, as my outward appearance doesn’t display my ailments. Or, if they were just inconvenienced by the fact that I was there; in a wheelchair, probably considered in their abled-body, and therefore entitled, way. Either way, I was uncomfortable. I felt like now, I was not only a hindrance to my family having a good time, but apparently to EVERYONE at the Park. I ditched the wheelchair each chance I could, because in it, I felt apart from the rest: a “one not like the other” sort of feeling. Out of it, I felt accepted into the crowd. It turns out that I was right: Disney in a wheelchair is not as enjoyable – at least, not for me.

I accept this could have been my own perception, and not actual. But isn’t that where we all live…within our own perceptions? And how is it that my perception is echoed across the disabled community by thousands upon thousands, if there wasn’t truth to it? They can’t all be “perceiving” injustice, inequality and discrimination – much less, unfriendly stares. This experience has only compounded my determination to become a mouthpiece for disability rights. Once I am well again, I will fight even harder to be heard for them.

This trip has made me think a lot about the fortitude it takes to live as a permanently disabled person. Fortitude is described in the dictionary as, “mental and emotional strength in facing difficulty, adversity.” The strength in character it takes to look beyond the unfriendly stares and judgment must be a huge daily challenge. It seems to be “insult upon injury” to have to deal with such unnecessary indignation.   I am not sure I would have the grit it would take, or the tolerance. Hell, I was sore by this one experience at Disney! I can’t imagine how irate I would become with constant exposure. I envision lots of swearing…lots and lots.

Beyond my ineptitude of embracing the wheelchair, and all the stigmas that come along with it, I found a deep respect for others who can – as it must take a “lion’s will” to stay composed. I presume that the fortitude required isn’t just the strength to get through the difficulty, but also the capacity to face that situation in a spirited and resilient way: to resolve to find happiness anyway – especially at the “happiest place on earth.” That is the “good stuff” in which I should have drawn upon during my time there, just enjoying where I was and looking through the glares with a smile. I won’t wager my joy again because the “sheep of society” may view me as “lesser.” As they say, “Lions don’t lose sleep over the opinion of sheep.”