When I saw this video I was actually preparing my piece The empty cup, which is a poem about a blind person needing spiritual sight to see the need for spiritual growth and a more loving heart. I thought this was the video to go with it, but something in my heart said that it is for another piece. The strong call to share with you in this way confirms that feeling in my heart.
Life can hit you hard. For those who deal with chronic or rare conditions like myself, I have learned that words can have healing power. The journey for those who don’t know how much energy they will have when they wake up can have them sometimes wanting to give up, to say enough is enough. I choose to die by surrendering myself to my conditions.Then, I believe that is when the Lord sends people to us with the power of their words, words bathed in love and those outstretched hands of caring, that say I am doing my best to hear your pain.
Two days ago I experience a major mast cell attack that comes close to taking my life. I run out of ketotifen fumerate, which is a mast cell stabilizer. Mast cells are those cells that form part of your immune system and are in your tissues and organs. The person responsible for signing the forms for compassionate coverage of this expensive medication is away on holidays. My wife, Karen and me, are left scrambling to get the ketotifen fumerate I need to stay alive. My doctor is away on vacation. My local pharmacist has no ketotifen fumerate available. Our local medical centre doesn’t fax the prescription to a drug store in New Liskeard until 4 and a half hours later from the time Karen contacts them.
I have what doctors think is systemic mastocytosis, which is a more serious and invasive form of mastocytosis. According to a University of Toronto report entitled Mastocytosis Disease of a Thousand Faces the condition affects 1 in 500,000 people in developed countries. I have been intubated eight times because of mast cell attacks. The attacks occur with a trigger or just because it decides on a given day it will be the condition. For me I get such symptoms as abdominal pain, bloating, attacks that look like allergy attacks, high blood pressure and heart rate all the way up to anaphylactic shock and respiratory failure requiring intubation. I recently had a skin biopsy for a lesion that my doctor says is abnormal because a lot of blood came out of it and there is far more pain than is normal. We await the results knowing that God is loving us through this time of uncertainty. We believe God is working out His plan to touch ours and many lives through all we are experiencing.
Karen sees me declining with each passing minute. First, I get really tired. Then, my blood pressure starts going up. I notice this because I am on a tele-health home monitoring program in the province of Ontario. I report my vitals five days a week through a tablet that sends my information over a secure network to a nurse with the Community Care Access Centre (C.C.A.C.). Then, I have trouble breathing. I turn on my CPAP (continuous positive airway pressure) machine and put on the mask attached to it, to keep my airway open. The phone is right by me if I need to call 911.
Karen experiences the terror of leaving me alone while she drives forty-five minutes to New Liskeard and back to Englehart with the medication. I pray for the Lord to protect her and calm her fear. I double up on all my mast cell stabilizers.
While I am alone I pray for God to keep me alive. I think how easy it would be to just to take off my CPAP mask and let death come. That is where the darkness wanted me.
Karen arrives with the ketotifen fumerate at 2:00 p.m. She tells others that I am barely conscious when she puts the four pills in my hand and I take them. In that moment I did have a choice. I could have refused to take the ketotifen fumerate and seize the opportunity to escape my life with all of its stress and ongoing hardships.
No longer will I feel like a failure as a man because I can’t provide for our needs. I battle between the knowledge in my mind and the feeling in my heart about that gnawing, agonizing sense of failure I feel, that I have not gone as far as many of my peers in having financial security. I struggle with the faith that I know God provides and that sense of helplessness to change the equation that God has the power to change. No longer will I have to struggle with the government to get the costs of all of my medications and treatments funded. No longer will I have to go hat in hand seeking help from my friends. No longer will I have to fight the daily battle to live with all of its pain, wondering what energy I will have that day. No longer will I have to see the sorrow and the weariness looking into Karen’s eyes as she sees me battle on to live. No longer will I have to spend the long hours each week networking with others for opportunities, that would lighten the financial load we bear on the limited funds of Ontario Disability, that doesn’t give people the proper coverage they need for the many medications those with chronic and rare conditions have. If given the help they need it would improve the health of many people, so they could work and become taxpayers.
My pain would be no more. But I choose to seek God’s strength to live on and be one of His healers of wounded hearts, to be a voice that calls others to care and no longer give excuses to those who ask for, who pray for that one open door with a hands of love on the other side of it, that would lead to hope.
Thanks to help from loving friends we are able to pay for the medication. No words we could say or write can fully express how much we love you and thank you for being God’s extended arms of love in our time of great need.
Many who work in social service, government and in community do what they can, but their hands are tied by policies that don’t give people the strong arm up they need. These suffering souls are left to die a little more each day until death feels so much a greater mercy, so much better than an existence where moments of joy become harder to find, where light and hope becomes so much more difficult to see, to believe in.
I possess within me the power of the freewill choice to die. Yet, my calling, my faith, my love for my wife and the support of family, friends and my pastor says don’t give up. There are far brighter days ahead. Kevin, I’m not finished with you yet. There are many more lives you need to share My love with. There are many people you need to continue to advocate for in a system that can feel cold, callous, heartless and indifferent. You need to tell them there are people still in their corner fighting for them, so they can have a life where they get that job and/or education, that will provide for them and their families. There are so many hurting souls filled with pain they find too difficult to speak out, that screams at them in the silence of too many long, lonely and sleepless nights. They all need the power of the words I give you to share.
We are thankful for caring friends who help with the cost of monthly trips to the Canadian College of Naturoapthic Medicine in Toronto, Ontario. We are also thankful for the counsellors, social workers and caseworkers with Ontario Disability, who really listen to our journey. I am under the exceptional and compassionate care of Dr. Jonathan Prousky and the team of naturopathic doctors and interns who assists him. Conventional and naturopathic doctors are improving my health, energy and coaching me to keep on fighting. I thank God for my doctor, Dr. Eugene van Onselen, who is fighting along with me with his skill and his heart. There is no known medical cure for my condition. We rest ourselves in the healing power of Christ, who is our Great Physician and the most powerful healer of all.
It is in these challenging times that those ready to give up on life need you to love them like you never loved them before. They need to see your Christianity lived out through a faith that will hold their hands through the storm, no matter how long it lasts.
You don’t need to have the answers. What you do need is the power of your words like that blind man who needed others to see what blindness means for him. People needed to stop their hectic existence for a moment and see a man, who was begging I think for far more than just money. He was pleading with those strangers passing by to bring some love and joy into his life, to help him see a beautiful and compassionate world he could no longer see.
In his moments of deepest sadness along comes his good Samaritan, who stops what she is doing and changes the sign, to communicate the message people really need to see and hear in their hearts. I can’t see this beautiful world. Help me to feel it through your love.
When thoughts of giving up encompassed me, Airy Kary, a facebook friend, gave me the power of her words through this picture image.
Father, help us all to be Your lights shining out in the darkness to all those ready to give up. Let us show them through our prayers, outstretched hands of love and support, that we will help them to hope again until they can find their own. Whatever good we can do that You call us to do, let us do it with joyful hearts. When we feel overwhelmed by the sea of need around us and in our world, let us focus on loving just one person at a time, helping one person at a time, through the power of our words and practicing the power of our presence. Give us the understanding in our hearts that we preach a gospel that is powerful through the healing power of that hug, smile, and even simply saying, “I don’t know what I can do to help, but I am here to listen and be here for you.”
Father, let us all love that one struggling soul You put before us. Give us the vision and the compassion to change our community and our world loving one person at a time.
I end with this song, People Need the Lord, that I feel in my heart is where many lives are at, where I am at right now. Oh, Lord, I need You so much! There are so many hurting hearts I feel need you right now. Give me Your love spoken through the power of my words and actions. Heal Your hurting children with the power of Your words spoken to their weary and worn hearts.
Posted in Rethinking
Tags: calling, Canadian College of Naturopathic Medicine, caring, chronic conditions, Community, darkness, death, good, government, heal, Hope, hurting, light, loving others, mastocytosis, medicine, mind's seat, Naturopathy, Ontario, Ontario Disability Support Program, poverty, power, purpose, rare, Samaritan, social advocacy, social justice, suicide, Toronto, words