(I drew me in a different style. I'm trying to practice drawing different versions of me ;)
As a young child we perceived our parents as the authority figure. Though we didn’t always agree with them they were the ones who had it all together, knew the right thing to do and had the maturity of a wise one. But as we get older we see them more as people; with their own bag of problems and insecurities. Nothing really changed. It was always there, but we weren't equipped to observe them and we didn’t have the experience to see it.
We want to see things the way we wish they were, because it is far easier-- to see people as Super (emotionally) Human. We want these superhero archetypes of somebody who can do anything and doesn’t feel the feelings of insecurity that we all feel, but the reality is, is that doesn’t exist.
The evolution of understanding of what “strong” means from childhood to adulthood changes. When you are a kid you think being strong is always being steadfast and not feeling fear, but when you are an adult you realize being strong is having those feelings of fear/sadness/insecurity and yet still pursuing or moving ahead despite them. Physical strength is a continuous change for me and in its course the idea of actual strength becomes much clearer. I am learning and with every phase of uninvited progression - I am forced to rebuild who I am and then reevaluate the expectations I hold over my head. When you are weak, you are strong accepting help, and love, from others in what is the most arduous time, that at moments require herculean strength.
I just arrived home from the bookstore and walked the 136 steps from the car to my house door. This time Jason was with me and feeling particularly tired I held onto his extended arm as a guide. As we walked through the gate, and as the automatic house spotlight turned on, I was struggling and whispered to Jason, "I'm not sure if I'll be able to keep walking much longer...".
"Keep trying. You have to", he replied.
"I know."
It's California, but it seems chillier in the northern area, and so I took a bath because soaking my body helps a little when my joints start to hurt. My joint problem is not the result of the condition, yet I think it has developed as a result of all the physical compensating I must do just to achieve everyday things. I have to stylistically get out of bed, get into a bathtub, walking..etc. in unique and different ways and I think this adapting has lent to joint discomfort and pain. I digress.
I sat in the bath thinking about how weak I felt today and the next stage that is not too far around the corner. Yes, I know, "Don't worry", I say to myself. "When it comes you'll do it", but darn those corners of my eyes as they dampen again. I lay in the bathtub and my face starts scrunching up, my throat closes and the tears seem to come from my way down in my belly. It was hard to breathe and I silently sobbed trying to catch my caverned breath. Deep breaths..1...2...3...while tears flooded my eyes. It was a quiet cry, the kind that comes from disbelief...the kind that comes from a hard lesson learned...the kind that comes from acceptance and yet is still painful...the kind that comes from seeing all sides of the sphere...the kind that leaves me speechless and humble in my soppy skin. Deep Breaths.
Significant milestones of progression are always difficult to adjust to and often times it feels like the jump in weakness came from out of no where. Canes and braces was a significant milestone, not being able to ascend curbs, no longer being able to climb stairs, not being able get up curbs, ramps and now this sensitive stage between walking and a wheelchair. "Gosh, I'm not sure I can handle it", I quietly say to myself. My next significant milestone is a wheelchair. I am not being negative, just realistic. It is hard to explain what the weakness feels like. The legs beneath me feel like toothpicks; a house of cards that feel like they are ready to collapse with any slight passing wind. Some days are better than others. My body does not feel like it is a part of me. It feels disconnected and there is a point where the weakness becomes unrecognizable, because parts of my body literally lose capacity to do certain things. There is no 'willing' my legs to raise and bend--like a marcher in a marching band would do. There is no break.
Every stage prior to this one has been relatively easy for me to get through. I didn't cry much and just took it like a regular everyday life struggle as if it didn't interrupt my life at all. But this stage...this stage is the hardest. Not wanting to go into a chair is NOT a pride or vanity thing, yet it is knowing that I will one day completely lose my capacity to walk. Once I go into a chair I will walk less and my legs will eventually atrophy into nothing. Once I go into a chair it will be an automatic chair, because I don't have the arm/shoulder strength to manually propel a manual wheelchair. Once I go into a chair, new weaknesses will surface and my arms, hands, upper body are the next in line. I hate the feeling of the physical weakness. It is not a mental weakness for I know I am pretty strong there. I usually cut through struggle, but this is surreal at times. I am slowly disintegrating and it is almost a tease how it allows me to hold on to the very tippy top of the physical ability at hand ..."I can sort of still do this thing, but it takes all my might to do this simple task. I don't understand. I could do it or do it better last year." "Just one more second, let me keep this for a little longer. I promise, I really do appreciate you (physical ability of any given phase)."
When the image of a wheelchair comes to mind it does NOT have to do with pride or vanity. I mean, sure-I wish they were cooler looking ;), but as far as the image of BEING IN a chair--this is not what bothers me. As the years progress I have become more confident in my skin. I know WHO I am and don't care too much of what others think when they see me with a cane or in a chair. Sure, there are always remnants of insecurity or awkwardness; people who stare, people who are surprised that I, a "disabled person", is good at something, but try my best to not make it a limiting factor for me. What IS hard, though, is this feeling of weakness. It is not fleeting - it doesn't go on vacation and it takes my physical capacity little by little. So what do you do? You dig deep down to the super-human inside of you. We all have it and it waits there until it is tasked with a mission. You grieve in your moment, clean up, dig deep and then you proceed...step by step you get there. I know I will be ok, but I still cry at every loss.
I was digging through some past written journals and thought I'd post an old entry from two years ago.
Written entry from my journal, April 19, 2008
" Sometimes I imagine the pace and rhythm I would walk if I didn’t have this disease. I am used to how I walk…but. It. Is. so. slow. My mind is fast and thumping like a rabbit. This pace that I would walk, I can feel the rhythm in my heart. I'm walking down the sidewalk with my shoulder bag fling-ed over my back. Left foot. Right foot. feeling the wind on my face…hopping off the curb without a thought…without a missed beat.
I try not to miss these things, because bottom line is I am lucky. But, I can’t go through life dismissing my (difficult) experiences and the level at which they make me sad (or happy), because I am busy putting things into perspective with a comparison and contrast analysis chart. Truth is, I can’t control when these feelings of loss seep in. They change me. They are sometimes nagging…When they do seep in, I miss it. I miss everything. And as time climbs, however that is or means, the list of things I miss become longer with a growing concentration of the things that are minuscule to most, but aren't so minuscule to me. I feel like I am dreaming and my hands are out before me. All is can see is my hands and I am reaching out to those small things. Like slipping on a pair of shoes, picking up things on the floor, sitting without discomfort or pain.
In the earlier stages of this disease I missed running…then I started missing walking freely without a cane…then I missed slipping on a pair of shoes…missing holding this pen without weakness in my hands or the fact that hanging my head over this pad of paper didn’t hurt my neck so much…smaller yet-rolling over in bed, dialing buttons whithout having to consciously PUSH them, holding a hair dryer without feeling like I am holding a brick…
As my list of things expands I can’t help but cry. I’m positive and genuinely satisfied with my life, but I cry still. I learn so much every day. About myself and others. But this will never take away the fact that it is saddening at times. In my alone, quiet moments when it catches me off guard, at my purest state, I feel like I am losing parts of myself everyday with every loss. I believe there is a gain. I learn what I can do-What I am capable of and list of ‘cans’ and ‘cants’ are hard to put on a pros and cons list. My heart feels quiet and absorbent. Through more of this journey I feel more and more quiet…listening more internally…I feel like I am pack-rat absorbing the faces of those who walk by; their issues, problems and their lives…like a sponge. "