It is not the critic who counts;
not the man who points out how the strong man stumbled
or where the doer of deeds could have done them better.
The credit belongs to the man
who is actually in the arena,
whose face is marred by dust and sweat and blood;
who strives valiantly;
who errs and comes short again and again;
who knows great enthusiasms,
the great devotions;
who spends himself in a worthy cause;
who at the best, knows in the end the triumph of high achievement,
and who, at the worst, if he fails, at least fails while
so that his place shall never be
with those timid souls
who know neither victory or defeat.
I intended to write something entirely different tonight, but when I started searching for words of encouragement, to ease my overwhelmed soul, I came across some that were worth copying here.
Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.
The whole idea of living with a chronic disease really just stinks. I mean there are a lot of things, in a lot of people’s lives that just stink, and there are ever so many that I would never for a moment trade places with. But, that doesn’t change the reality that this genetic disorder, this PTEN mutation, this COWDEN’s SYNDROME, is now part of our “real life,” and I would like to send it back.
Well meaning people, people I love with all my heart, and people I am indifferent to, ask me all the time how we are. I know they would love to hear that we are great. They’d like to hear that all is well. I could tell them that there are no deep dark fears of tumors or cancers, or surgeries keeping me up at night. I often lie and say, “great” forgetting to mention the scary headaches, the joint pain and the anxiety that hide behind the beautiful “braces covered” smile of my little girl. I sometimes say, “we are hanging in there,” which some days means we won’t spend three hours at a doctor’s appointment today, or I am not waiting for a phone call, or a nerve-wracking test result. Some days it means my heart is in my throat – but I don’t know how to tell you.
I remember when I used to love to eat. Lots of food – carbs, junk food, candy. I used to have an appetite, and enough energy to exercise too. I remember several sizes ago when I had a closet full of clothes. Now I have enough pants and shirts to get me through. I remember when my old boobs filled out my tops.
I sometimes think to myself, “this is not my real life.” Raw fatigue. Nerves. Stress. Balancing a full-time job, and the normal demands of parenting with the full-time job of managing this disease. Has it really only been a year that life has been this complicated? There were always issues. But a year since the diagnosis. The confirmation that these risk factors belonged to us. That they were real, and pressing.
And yet to look at us – you would never know. You wouldn’t know of this other life we lead. This “elephant in the room.”
Everyone has something. I have said it a million times before, and I will say it again. It could ALWAYS be worse, and there is ALWAYS something to be thankful for. I am grateful for that reality check.
When I don’t call you back for a few weeks. Or, when I start sending cards late, and losing track of dates. Don’t worry too much. We are treading water here. We will get by. Just cut us some slack. Some days it just doesn’t all fit, and some days there is just not enough wine.