Photo by Jamie Nix

Have you ever been in a situation where the one piece of important information you needed to say was the LAST thing you wanted to share? I know that I have. You go over what you would say, what you should say, and how you want to say it.

Perhaps it is something so personal that disclosure would be followed by judgement, vulnerability, and revoked opportunities. This is when we see the significance that dignity plays in our lives; when we walk the fine line between entitlement and judgement.

As the end of my school placement nears, I feel myself really struggling with this thing….disclosure. Jobs, alone, are tricky enough to grab hold of. So, with this extra personal piece to consider, I find it tough to really know where I’d fit. You almost find yourself doubting yourself and your abilities because you don’t want to commit to something you’re not 100% certain you can do. You don’t want to let anyone down and, most importantly, you don’t want to let yourself down; all because you wanted this position so badly…all because you avoided one bit of truth for fear of losing your dignity.

Yes, I talk about my MS here; on the open web. So, why do I feel that I can’t talk about it with potential employers? Why do I feel that maybe I shouldn’t? As much as I don’t want to admit it, I really care about what others think of me. I’ll forget all about the pain that I am in and ignore my numb legs JUST so that they can see how good of a worker I am…how dedicated and committed I am…how reliable I am. AND it’s funny that I really don’t mind talking about my situation with others. In fact, I enjoy educating and providing my own perspective. This also then paves the way for others to share their own insight; whether it be about MS or another challenge they are dealing with.

Given this opportunity…this setting…yes, it is simple to talk about my MS. So why do I feel so much more exposed when I speak to a person of authority; of power? In all honesty, no one should hold that type of power…that type that makes you doubt yourself. So maybe that power is confabulated by my own insecurity with my disability. Why wouldn’t I be considered JUST as much of an asset as the next person? If anything, my perseverance to try and continue may just make me that much more of a desirable worker. Of course within my personal physical limits. Those limitations, which if known, would be appreciated by any employer; if disclosed honestly and sincerely.

With honesty, much can be shared. Much can be disclosed. This enables trust and establishes a ground of awareness. However, where does dignity draw it’s line? Therefore, I say (and many of whom I’ve spoken with) to share what is NECESSARY. With time, other points may surface and become known. But, keep that dignity and sell your abilities!

If there is something that I’ve learned in the short time I’ve been living with MS, it is that I am not worthless and definitely not less deserving of a chance than anyone else. I may…you may…be that perfect fit.

I know that my MS is now, and will forever be, a part of my life. And, though I can focus on all of the things I can no longer do, I can also focus on the immense opportunity I’ve been given…a front row seat to perspective. What a humbling and peaceful point of view!

So, the thing to remember is that, when given an opportunity to share bits about yourself with others, be honest. Disclose and take pride in knowing that you are different…a commodity…because you ARE deserving.


Shedding Light

Shedding Light

Today, I want to start off on a better note. I want to void these negative feelings. Not ignore, but rather channel them in a positive direction. Everyday IS what you make it and, to have that much power focused on darkness, is really maladaptive. So…I want to shed some light on that shadow I cast and focus on the good in the day…in life.

First, I want to center in on all of those that support me. I want to acknowledge them and bask in the goodness that I am filled with by their kind words. It’s incredible how much difference even one person can make in your day…your life. I want to thank those who’ve extended their ears, arms, and help if I ever need it…because I do. We all need that from time to time. It’s so easy to get caught up in your own story; focusing on all of the pieces you want to perfect. I know I am guilty. But when you look around, your life and it’s parts are completed by the people who make time for you and the people you make time for. This is one goodness that I am grateful for and one that gives me hope.

Second, I want to reflect on my accomplishments; both big and small…even minuscule. And I think that everyone should do this; not to glorify, but to appreciate and find peaceful fulfillment. I have built myself, with the support of others, and I AM proud of all that I’ve been through…of all that I’ve overcome and learned in making me. I push myself, as a perfectionist, to be the best that I can be…to do the best that I can. And, I’ve come so far in the past year with myself, that I am happy. Why would I want to belittle the good I’ve found from this? I feel much more in tune with my body and the things that I can handle. I’ve learned that my best one day may not be the same the next, but it IS still my best in that day…in that moment.

This IS goodness, and it surrounds me wherever I go.

I apologize to myself for being sad and for being angry. Because this doesn’t lighten the load I carry. Like I said before, it is maladaptive. With anger and sadness comes stress; followed by exacerbation and self-destruction. Don’t get me wrong…it is good to feel and let out your hurt. But letting it consume you is a dangerous route. I know stress affects the way the body’s systems work and can actually be harmful and degenerative…I don’t want that…I don’t need any more of that.

I apologize to those around me that see my sadness and hear my anger. It’s human nature to act towards others as you’ve been  acted upon. And I don’t want to be surrounded by those feelings all because that is the environment I chose to build my foundation on. I see others suffer and I know that there is only so much I can do. I can provide support, I can provide encouragement, and I can listen. But, I can’t fix or make better what they are going through on my own. So, same goes for me. I accept the helping hands and hope that, through the strength within me, I can stand out of that darkness and share the light that is extended to me.

Life is a gift. Life is hope. Life is light.

My Demon

My Demon

MS; my friend…my demon. The endless oppression I feel as it towers over me, whipping me for everything I do. No matter how hard I try; try to befriend it, forgive it, love it; it turn it’s back with hateful spite. One day I walk free, the next I’m crippled with pain…with numbness. The roller coaster I’ve boarded is relentless.

I relish the better days; feeling incandescent with hope that the next day could only be better. I forgive, I befriend, I trust, and it stabs…when I am most vulnerable. How many times is acceptable to have your hope crushed? Your forgiveness disintegrated to nothing.

Is my hope for “good” my fault?

I like to believe that there is good in everything. If you search hard enough in those unsteady areas, you’ll find the goodness it holds. I can try to explain the challenge that I face in finding the beauty in my situation, even when I keep falling…literally. It’s so easy to be happy on the days when my MS is napping and when I am being extra careful not to wake it. But when it strikes, I can’t help feeling helpless and discouraged…because this keeps happening to me and, why do I let it? I let it drag me down into a deep pit of anger and sadness…of loneliness. And here, I see the face of my demon.

Everyone says that your attitude and focus play an important role in recovery. They say “stay positive…you’ll get through this…just relax.” I believe they are right but, I only wish it were that simple. Because, not only am I fighting with my body, I’m also fighting with my mind; to NOT be sad, to stay STRONG, to keep MOVING forward. When I persevere through the lashes and finally rest…crippled…I feel angry for not stopping before this point.

Now that I reflect on these moments, I see the goodness in my perseverance. My fault is NOT in my hope and forgiveness, but in my anger towards myself after the terrain I’ve overcome. Though I say MS is my demon, I believe it is more my teacher; and that the negativity I let consume me, because of my MS, is my demon.

This week was a demon week. Still struggling with the virus brought by my fever; exacerbating ALL of my symptoms. I felt lethargic, weak, fatigued, sad, and hopeless. I was in that pit and I felt sorry for myself. In public, I tried to mask all of the pain and self-loathing, of not being able to complete things as I should…as most anyone can. I kept a smile displayed in attempt to convince myself and others that I’m okay; when really, I’m dying inside. Few suspect anything, only those that can see me limping and bouncing off of surfaces. I see their look of concern…of pity…and my feelings are mixed. What are they thinking? How pathetic do I look? Do they know? Do I want them to know? So, I sit and my leg begins to bounce…continuous and involuntary; I have to physically stop it with my hand. I wish…I pray…how badly I want this to be over. And, in the privacy of my room, I feel all the rage and pressure that’s built up over the day, and I sink into my sad little pit. Life shouldn’t be this hard, should it? What am I doing wrong? How do I get rid of my demon?

Lost In Limbo

Lost In Limbo

Where am I and what am I doing? It’s almost impossible to explain the difficulty in planning. All the unanswered questions…the “what if’s”…the decisions. What do you  REALLY want to do? What part of that is realistic?

I find myself lost, in limbo. Last year, I had an idea of where I’d be; a general plan for my future. But now, I am bombarded by all of these decisions…all of these options; and none providing complete security…none that, alone, combine ALL that I want in life. It’s hard not to feel down about catastrophic life changes. Sometimes I feel as though my world’s been shattered, while I was flung out of orbit and cannot catch up. Now, I’m somewhere in limbo, trying to figure out which direction to travel. Which choice will best patch up the holes I first fell through?

It hasn’t even been one year since my diagnosis and I’ve probably decided on 4 or 5 different plans, which I’ve also threw to the back burner…thinking that SOMETHING will happen and one of those plans will be the definite answer. But, I’m lost; overwhelmed with impatience, inconsistency, and indecisiveness…a lack of assurance. I have no idea where I’m going or what I’m doing…I’m in limbo.

I keep waiting for someone to tell me what to do, but when they do, I find all of the flaws…all of the excuses that will prevent me from taking their advice and running. I’m sure this drives those around me crazy! I’m not proud about this habit of mine, but I do want advice…opinions on which to build my own plan; using all of the best pieces.

I have to say that MS can put a real damper on my future aspirations. Beginning with the mere ability (or lack there of) to walk anywhere/everywhere without fatigue or numbness, to the strictly scheduled monthly infusions I need in order to keep my irritable MS quiet and humble. It really makes it difficult for me to plan and even enjoy spontaneous events, because MS has no plan. It does what it wants, when it wants, and really has it’s way with me.

Perhaps the reason for me having developed all of these half plans will work in my favor; and one day SOMETHING WILL happen. I don’t know why I am so anxious to have a set plan. There IS comfort in scheduling; in a routine. But, maybe, I’m lost in this limbo for a purpose. I’ve tried, and am still trying, to make plans and set things in place so it is easier when I DO get there. BUT, I’m making it more difficult for me right now…because I’m afraid…because I’m anxious.

When I really think about it, and let myself relax, there’s something quite calming about being lost…having no plans set in stone…a calm that is comparable to the comfort of a schedule. I can do things at my own pace, I can rearrange my day, I have all the freedom and time to do with what I want. I suppose limbo isn’t so terrible. It can be quite a good companion for self-acceptance, reflection, and relaxation. A place, where the world runs on your time.