I was diagnosed with GPA almost 9 months ago. At the beginning of this past month, my doctor wrote the word in my medical file that every GPA patient wants to see : 'Remission'. It has been a long and exhausting journey to see that one word. The drugs, the side effects, the complete and utter exhaustion, scopes, scans, uncountable x-rays and blood tests and the challenges of living every day with a compromised immune system have made for a unique journey, the kind that I never thought would be mine.
I have never been the kind of person that lives in half measures, and it is exhausting to have to constantly remind myself to slow down. Truly I am only on the road to what is medically considered real remission, which would mean that I would have to be symptom free, and be off all of the drugs that I am currently on. However, knowing that I am on the way there helps me to have hope, and to force myself to stop and rest, when before having GPA I would have pushed myself to carry on going.
Each day that I am able to get out and run, I have hope. It feels like life again, albeit slightly slower than before. I run for those who cannot, and for the years that perhaps I may not be able to, because I had honestly taken the simple joys of life for granted before and now I am reminded every day that forever may not be as long as we think. I may never win another race, but I will certainly try.
I realise that the battle that I fight has a name, and I am thankful that I know it's name, and that although doctors don't know what causes it, nor is there a cure for it, at least I know what I am fighting. It is now sleeping, with the help of the drugs and the many prayers, and by the grace of God. However, many people that struggle with an autoimmune disease struggle for years to get a diagnosis. The disease can be put to sleep (remission) for a time for many people, but for many the damage that is done on the long road to diagnosis is unrepairable. My GPA moved fast, and violently, and although I nearly died, I am thankful that it presented itself the way that it did, because it forced the doctors to keep looking desperately for a diagnosis.
And while I continue to walk this unsteady road to drug free remission over the coming months, I dare not live my life loudly, but have quite enjoyed the process of learning to live slowly for the first time. A life in which I really see and hear many things for the first time -it is truly a gift that not all of us are given. To have something that forces us to realise that our tomorrows may be numbered, and to make the best of each and every one of them - a gift, wrapped in a rather unlikely disguise. There are many days that I would like to exchange my gift, but I have also come to realise that everyone is fighting a battle - and perhaps I overlooked the struggles of those around me before I really had any genuine struggles of my own. To have one's own struggles in order to really see the struggles of others, and to live in human brokenness in some form or another so that that you can truly understand and appreciate the hardships that some people have to encounter - that is the gift that leads you to the road to true empathy.
So here's to remission - to the putting to sleep of the giant that is GPA. May he never rouse again - but if he does, I sure am glad that I know his name, and am armed with a doctor who has a good idea how to fight him to sleep again.
Sleeping Giant
There's a sleeping giant inside me
I dare not to rouse him
Life is a tiptoe, a quiet dance around him.
There's a sleeping giant inside me
Sometimes he stirs
But yet, he doesn't wake, and I am free again.
Free to wonder when or if the giant will ever wake.
Will he ever show his head again,
Or will his slumber leave me in peace?
Life is for living they said.
The warning is clear
Don't live too loudly, or the giant may wake.
I have only met my giant once.
He tried to kill me.
I know his name now, and fought him to sleep.
Nobody knows where he came from or why.
But now he is a part of me.
Sleeping quietly for now, hopefully never to wake again.
Life is for living they said.
Who knows how much time you have?
You cannot be afraid of the giant - you must live.
But here I am tiptoeing around him.
Playing gently so that I can still play.
My soul shouts 'live', but my spirit whispers 'quietly'.
Live quietly. Not in fear of the unknown.
For I know his name. He is known, and I do not fear him.
But if I live quietly, I know I can live.
Living quietly, laughing loudly.
Slowly. Listening. Looking. Really seeing for the first time.
The giant gave me this.
He tried to kill me.
But also, he gave me life.
Quiet life. Real life. Treasured moments that could be my last.
For the gift that he gave me,
To treasure each moment
I will be thankful, even if we never meet again.
Oh sleeping giant.
Thank you for your gift.
Now, sleep, sleep deeply. Do not rouse. Let me live the quiet life.
