Four days ago a skin biopsy for a lesion on my body confirmed that I have mastocytosis. Based upon the fact that there is more pain than can be accounted for from it and there is a nerve and blood supply to the area of the lesion, my family physician, Dr. Eugene van Onselen, is suspecting there is lymphatic involvement, I will be having surgery to remove it in the event it could be cancerous. There is neuropathic pain in my feet and legs. This is a rare auto immune condition that according to a University of Toronto report entitled Mastocytosis Disease of a Thousand Faces, affects 1 in 500,000 people in developed countries. In the UK 1 in 150,000 people have it. I have 48 0f the 58 symptoms members of the Mastocytosis Society of Canada report. My doctor I had in Toronto calls me Mr. Rare. My wife, Karen, calls it allergy on steroids because it shows itself in many as looking like severe allergy attacks. I tell people it is a neighbourhood block party that is out of control. I have been intubated eight times. I treat each day as a gift where I have the awesome opportunity to inspire the lives of others through my journey.
I would like to encourage everyone who has mastocytosis, rare or chronic conditions, that you have this condition, but it doesn’t have to have you. For me even as I struggle with the many symptoms of mastocytosis ranging from abdominal pain all the way up to anaphylaxis, I am doing my best with God’s help to show people by my life and positivity that this cross Karen and me are called to bear, will give others the hope and inspiration as they carry theirs, whether it is a condition or life struggle that can be seen or it hides in the shadows invisible to the human eye. For me I find that many of the things I thought were important aren’t. Of course, I can’t ignore the roof of our home we rent, where water has poured into our kitchen from rotting shingles. Alas, these are the stressors in all our lives we can’t dismiss and must resolve. All you are going through can be part of your journey to inspire others in theirs. Laugh as much as you can. Don’t feel you are weak because you need help from others. In many cases they are waiting for you to reach out to them. They are feeling helpless. Let them feel useful by allowing them to be there for you in your time of need.
Let go of the anger against the people who have hurt you. Consider that they are human and make mistakes; we all do. Unforgiveness is a cancer to the soul. It will kill your spirit and then you. Every day I am reminded in some way in which I still need further maturing of my own imperfections. My Lord reminds me in love of the people I have harmed through ill-thought words. Forgive me. There have been times in these ongoing struggles I have not been myself. We all say and do things we regret. All any of us can do is be the best me we can be.
Father Henri Nouwen, who was a Catholic priest, chaplain at L’Arche, a group of independent living homes for the developmentally challenged and gave such passionate and engaging lectures as a theology professor, wrote in The Wounded Healer, how pain can be a teacher. It gives us that window of understanding into the suffering of others. It can be a transforming journey which makes us better people, if we learn the difficult and enriching lessons it teaches us.
Please pray for Karen and me in our journey. We will pray for you in yours.
Have a light-filled life!