I know… scary.
I went to physical therapy this week and saw my future; this cute little old lady who was completely hunched over and unable to move her head from left to right. I thought, “That is what I will look like in a few years thanks to Ankylosing Spondylitis, my spine permanently bent and ravaged by this awful disease.
The therapist saw the look on my face and asked what was wrong. After explaining that I’d seen a bit of my future literally pass before my eyes he patted me tenderly on the shoulder and shook his head, “I know, but look how cute she is.”
My next thought was, “I hope I’ll be cute like that when I’m that old…”
…and my next thought was, “I probably won’t even make it to my 70’s…”
…and my next thought, “WOW, have I really given up so easily?”
The truth? You probably don’t want to know but I’m going to tell you anyway.
Yes! The answer is yes I feel like I want to give up because I’m tired and just plain done. It is hard to explain without sounding like I’m whining and complaining that although in a month I will have hopefully avoided this latest health crisis, Avascular Necrosis, I am still facing some pretty tough battles to come. I will have to start infusions to treat the Crohn’s, Ankylosing, RA, and whatever else my body comes up with to torture me in the meantime. Going to the doctor has become a veritable minefield. Just because the outward signs of my illness are going away it won’t change the fact that I’m still struggling mightily both physically and mentally to keep going.
So I’ve come to the conclusion that I’m not allowed to give up on myself just yet. What happened to that inner fighter of mine? The one who claimed that no one could tell her what she could and could not do? I need her back and I need her back RIGHT NOW! No more wallowing, no more feeling sorry for myself, and no more holding back. I’m learning that I need to live each day as if it were my last but I’ve also resolved to look forward to tomorrow. So this brings me back to the beginning.
I’ve been thinking.
Lately I’ve been keeping myself busy accomplishing very little. As I sit here browsing the web, pinning my heart out on Pinterest, and generally making a nuisance of myself on Facebook, my little wheels have been spinning over what it is like to have an illness, invisible or otherwise. I’ve been pondering why God allows hard things to happen to us. I mean really pondering this question beyond the usual Sunday School answers we usually tell ourselves. You know, the feel good answers like, “This is how we learn and grow.” Or there’s always, “We won’t know exactly why we struggle in this life but all will be made known to us in the end.” And then there is, “All of these experiences are for our own good to help us be better people.”
While these are all true, I’ve been thinking that there is another answer that we rarely consider. What if it isn’t all about you? What if some of the challenges we face in life are for the sole purpose of learning to sympathize with, even empathize with others, and more importantly be of service to our fellow man? What if some of our adversities are for the good of others? Even more important, what about those trials that do double duty and help us improve while giving us the skills we need to help and assist specific people who the Lord places in our path?
I’m speaking to my own unique situation. I wonder if the reason God gave me some of my challenges was to prepare me for the invisible battles my own children would fight every day!
Currently my “invisible” illness has become very visible. I have mixed feelings about that. It is a strange dichotomy of emotions when I think about the fact that people are always staring at me, not to be rude, I hope, but rather because they are curious. In a way I’m relieved that people can finally see what I’ve been fighting against internally. On the other hand, I certainly make a spectacle of myself wherever I go.
So I got to thinking, which is worse, an ailment that is as plain as the nose on your face, out in the open for all to bear witness to or one that lurks within, destroying us from the inside out? Both come with their own unique emotional struggles and each presents its own challenges. However, for the sake of argument I’d like to say that I would much rather endure the curious stares of strangers over the silent suffering that often accompanies an invisible illness. At least when people can see what is going on they are more likely to understand, sympathize, and help. On the other hand, when no one can see how you suffer they rarely know that you need them.
My kids struggle with some of these same challenges due to the fact that, at times, they too suffer from both visible and invisible manifestations of their challenges. You might remember that my oldest has Asperger’s and my youngest has ADHD. Sometimes their struggles are very visible. For instance we struggle with simple social graces, transitions from one task to the next, and let’s not even go into their sensory disorders and the unforeseen pitfalls that arise from that issue. However, most often, their battles are too subtle for most to see or they’re fought on the inside where no one can witness how hard they have to fight to make it through the day.
I often hear comments such as, “They look so normal.” This is a hard comment for a mother of a child with a special need to hear. What you want to say in return is, “Well, how do you expect him to look?” Just because my child doesn’t fit the normal mold that you associate with a disability doesn’t mean that it isn’t there. I realize that when most people make this comment they are attempting to assuage my fears that my children will be ostracized or left out. And I appreciate those who come from a place of love.
The hard part is explaining that, while things “look” normal on the surface, they are most certainly not and if you were present for the day-to-day grind you might be surprised at just how hard they work to accomplish tasks that you and I take for granted. I get the same type of comments, “Well, you look so good!” I know it is out of kindness that people say this but again I want to respond, “Well, what did you expect?” My illnesses are fought on an internal battle field which requires monumental amounts of fortitude and strength. Take for example my earlier declaration that I’m not willing to give up just yet. Well, that is going to be much easier said than done. There will still be days when I’m fed up with the pain.
When your struggles are invisible to the rest of the world, it is difficult for people to imagine or even accept that you have to work much harder than most to survive daily life. I get really frustrated trying to explain to someone, “Well yes, in about a month I will ditch the crutches but that is just the tip of the iceberg when it comes to my health.” I’ll still have to face the fact that my body is literally eating itself alive from the inside out. Not a day goes by that I don’t feel excruciating pain and anguish in both body and soul.
Please don’t think that I share these things because I want your pity. I don’t need or expect any special treatment. My purpose is that hopefully you’ll be more aware of others and the fact that they too may be suffering. The old adage, “Never judge a book by its cover,” goes both ways you know. Just as great beauty can lay within the confines of an ugly outer covering, so too, can great suffering and torment lay beneath the most beautiful or even “normal” looking cover…
…and I’ll even take this a step further. Don’t we all struggle with an invisible something or other? It doesn’t necessarily need to be illness. It could be mental illness, deep emotional distress, grief and sadness, or an inner struggle to overcome an addiction or weakness. When we meet someone for the first time it is human nature to come to some quick judgments of who we think they are, forgetting that there is so much of their story that we are not privy to.
So, I’ve been thinking…
I don’t want to give up right now. I want to put these experiences of mine to good use and if that means that my kids have a mother who can sympathize with some of their struggles, even better. I wonder if through these adversities God is giving me the skills I need to be the kind of mother these two boys need, a better, more patient and loving one who won’t dismiss their inner struggles. A mother willing to stand up for them and fight for their well-being, reminding others to withhold judgment because things are typically quite different than what meets the eye.
What may be ahead for me is not within my control nor do I know what the future holds. I’ve been told that with each new diagnosis comes the threat of a shortened lifespan but whether that means another 50 years or just a short 20 no one knows for sure. What I can do is make good use of the time I am here. Time is a precious commodity. I’m reminded of that again and again in life. If my suffering can help others in any way I think that will make it worthwhile and give me the fuel I need to keep… well, keepin’ on.