I’ve discovered there is a fine line between hope and denial. I’ve been living more in denial than I have ever realized and now hope is all I have left.
For years, maybe even longer than I realized, I’ve been the leader, the support group, as many say ‘an inspiration’. I’m seen as a strong woman and someone who can withstand anything. I strive to always ‘look’ good despite how I’m really feeling inside. I was asked recently to take a look at that, where is that coming from? What is it about me, that feels that I have to “appear” to be okay, when I’m really not okay? “Why or what is it about me that always has to do it right?” The answer came to me quite easily,” “it seems to be what’s expected of me.”
Isn’t it sad? When I can be feeling as sick as the many other’s diagnosed with Multiple Sclerosis, feeling as if I’d like to stick my head in the ground, not get up and do my hair, put on my makeup and ‘appear” to be just fine, for fear of judgment from those who hold me to the highest of standards?
Who set those standards? Did I unintentionally set them when I spent the last 8 years fighting a disease the best that I knew how to by keeping a positive attitude, hiding behind the mask of what I was really feeling? By not allowing myself to be true and showing the anger that this disease makes me feel? Did I create this monster by allowing everyone that I care about to think that just because I look good, I must not really be feeling as badly inside because on the outside I appear to be okay?
My body is changing, the disease has been changing, It’s an ongoing process, it never gets better, it has it’s moments where I seem okay, some days much better than others. I am grateful for so much, I’ve been practicing yoga, kept a mostly positive attitude, I eat healthy and if I hadn’t done all of that these past 8 years, I’m nearly sure this disease would have knocked me down by now. I will continue to do all of this, but now my options have changed, I have to go on medications that have their risks, may or may not work and there are parts inside of me that are breaking, that are not visible to others.
There is judgment everywhere, gosh I was even called out at my own doctors office. Someone saw me there with my cane, this person, not meaning to be hurtful, thought because they see me on facebook, through my pictures and because I “appear” to be fine, gave me a look that was oh so obvious. this look was later confirmed when in a private message they wrote to me and asked why I was using a cane, they also stated how surprised they were to see me this way because they see how “good” I look on facebook, of course I understood where this came from but, this came from one of my own. Can anyone imagine how that must have felt to be called out by one of our own? I use my cane when I have to, unwilling participant in this disease I call it, but I have bad days just like many of us who have MS. I don’t like to use my supportive devices but do when I have to. Even my yoga mat is a supportive device, it’ keeps me quite grounded.
I’ve heard supportive things, “Lisa you are the strongest person I know, you’ll get through this”, Lisa, you inspire me and so many others, you’ll beat this” and while all of these things are wonderful to hear,and touch me deeply, the problem is the burden of it all. It’s like a double edged sword, in one way it helps me to come out of that dark place and picks me back up but in other ways it doesn’t allow me the support that I need, if I’m caring for everyone else, when do I get cared for? How can I be this pillar of strength, this inspiration to so many, when I at this very moment can’t find that strength to inspire myself?
What I need is my community, my friends, those people that I love to hold me up and say to me, “what is it you need from me to help you through this, I’m here for you, what can I do for you?” Sadly no one has said this to me, not one person and although this might sound like a pity party to some, this is me being my authentic self, speaking my truth.
I’ve done my part in all of this,and I’m proud of it. I’ve done seva, I’ve been fighting this MonSter we call MS, I will continue to fight it the best way that I know how to, but even the strongest of people sometimes need to lean on someone. Sometimes we need to just look like shit because that is truly how we feel, it’s not because we want attention or feel that if we ‘look’ the part that then someone will notice how sick we really are, it’s simply because we don’t feel well.
How many of the normal people you know when they have a flu, get up, take a shower, put on makeup, do their hair just so that they look good despite of how they feel, so to impress those around them or so that no one will be able to see what they are trying to hide? I’m nearly sure no one does that, so why is it unacceptable for us? Why is it that when I feel so awful, that I can’t just lay in bed, not get up, not impress, not look good without feeling as if I’ll be judged for doing it, or fear that I’ll be looked at as if I’m letting myself go, when that’s not what I’m doing, it’s just that I feel awful and have no desire to ‘look the part”
The time has come for me to be truthful, to lift the veil, I am angry, I am hurting inside, I am in need of support. I don’t want or need pity, I don’t need someone feeling sorry for me, that’s not what I’m about, that’s not what any of us are about. The way I hold someone else’s hand when they are in need, the way I intuitively know how to help, the way I can look inside and see what it is in someone’s heart that will help, that’s what I need. I don’t want to have to explain or whine about my problems, I just want to be understood. I can’t necessarily control what is going on, I’m fighting it the best way that I know how to, but when I need to sleep, rest or take a break, just know why…don’t ask …maybe do something to make It easier …
Satya Truth will set you free…