My wife, Karen, cross-stitched this saying on one of my t-shirts: “We must not allow other people’s limited perceptions of us to define us.” -Virginia Satir. This quote is most applicable to those who are chronically ill. The ideology that the chronically ill are weak, fragile and vulnerable needs to change. More of us need to develop an attitude of empowering the chronically ill.
I hope this piece encourages many chronically ill people not to give up. You are far more than the limited perceptions of others. You are beautiful. You are intelligent. You are creative. You are artistic. You have a right to the best quality of life possible. You need others to recognize that. You need more people to believe that you are more than your challenges.
My readers know I have a conformed diagnosis of mastocytosis, a rare auto immune condition from a skin biopsy. My doctor and Dr. Jason Lee, a mastocytosis specialist at St. Michael’s Hospital in Toronto are concerned my lesion may be cancerous. There is every indication that I have the more serious systemic form. I have 48 of the 58 symptoms reported by members of the Mastocytosis Society of Canada. I never do anything in half measure:)
My wife and I have advocated for over 12 years for me to get the help I need from government and community to live a quality life. We get nothing but excuses from the Wynne government and politicians in Ontario as to why they can’t help with the cost of many of my medications. We have had to go, hat in hand, to friends asking for their help far too many times.
I was raised to be able to stand on my own feet, to be independent as possible. It’s not that I haven’t learned the lesson of how we need to reach out to others for help. I know we show we are people that care by how we are there for others in those times of great need. I am sick and tired though of going to the same people over and over again asking for help with the cost of my medications and treatments. I keep praying to God asking,” Where is community when you need them most?”
I cry sometimes when I have to ask for help because people who could be helping us don’t. I feel like I am less than a man. When people who I care about judge me for not trying hard enough it hurts. I can say I will have a tough skin and not allow the false judgements of others to eat away at me. But if I put up an emotional wall to protect myself from being hurt I can’t have a heart of compassion for the hurting. I lose something of the caring soul that defines who I am.
I am at a loss to understand why more people have not helped us. Karen and I have a fundraiser on YouCaring that only two people have responded to. See:http://www.youcaring.com/medical-fundraiser/-ministry-student-with-systemic-mastocytosis-needs-a-hand-up/225136
We thank God for the two who have reached out to help us. The loving and supportive friends we have are a blessing to us. I know there are affluent people among our friends and connections and yet they stand idly by and do nothing. Why are those with chronic illness not given the help they need to be active participants in society, to get the care from government and community that in many cases could have the chronically ill person working again?
I have networked hundreds of hours for any opportunities. Don’t get me wrong. There are people who are offering to do what they can. They keep looking for opportunities for me. I am hoping that a part-time counselling practice will be successful once my health stabilizes enough to start it.
Why do people think they can get the chronically ill to smarten up and fly right? As Spock says on Star Trek, “It is not logical. ” The chronically ill in proving to others they are not weak do more than they should be doing and end up worsening their health. I know because I so often have done this myself. I am learning that I have to live as much of a life of balance as possible. When I work twice as much as a healthy person to prove that I am not lazy I end up with worse health. Then, I have to spend time recovering from overdoing it.
Karen has been insisting more that I lay down for a rest in the afternoon. When I let go of my stubbornness and do that I can have a productive day of writing, singing, song writing and studying in my M.A.-Ph.D program in Clinical Christian Counselling with St. James the Elder theological Seminary. I have more energy to love Karen in the way God calls me to love her.
You can’t fix a broken figurine to look like it was before it was broken. It will always have a crack in it. It will always be imperfect. To our human eyes the figurine will never be the same. Sadly, when confronted with the chronically ill, many people judge them as being flawed. All chronically ill people should be seen as being beautiful people. Like that figurine with the crack in it, we need to see beyond the illness to the wonderful person that is there, just waiting to be loved, valued and accepted.
There is such healing power in a hug. Please close your eyes for a moment. You are a child. You scrape your knee. The pain is so awful it nauseates you. You can’t stop crying no matter how hard you try. When you feel you can’t endure this agonizing pain any longer your mother comes to your aid. She kisses the bruised knee and says, “Mommy will make it all better.” She puts a Band-Aid on your cut. Before you continue to play your mother gives you a hug and says, “I love you.” Feel the tender warmth and compassion in that hug. You feel protected and so deeply loved.
Now, please open your eyes. Know that you are loved. Know that no matter what your challenge that you are not the lies others seek for you to believe. There are people who love you. There are people who care. Reach out to them in your time of need.
My greatest comfort comes from those quiet times I spend alone with my Lord. As I read God’s Word, read reflective writing or listen to inspirational music I am taken away for a while out of my worldly concerns and those to do lists to a time of peace and serenity. It is one of the ways in which I am given the strength to not only cope with my chronic illness, but to also give away the love I have received to others.
I know well-meaning people think that if they just use tough love, they can whip a chronically ill person into shape. What they fail to realize is that they are only putting an unbearable weight on the chronically ill person to prove that he/she is not the weak and lazy good for nothing. This leads to the worsening of their health, not the improvement of it.
I have experienced this kind of false judgement by many people, even in my own family. The comment of one of my sisters was this: “I’m in pain and I go to work.” It is a deep wound that I am still on the path of healing from. In sharing that pain with you I pray I will be helping in the healing of your pain, of those hurtful and judgemental things said about you that are the stinging salt of your wounds within.
More people need to develop a far more supportive attitude towards the chronically ill. Instead of labelling them as weak and incompetent, how about embracing their abilities? Here’s a list of ideas that could markedly improve the life of the chronically ill:
1) Bring over some meals when they are sick so they don’t have to cook.
2) Offer to bring people together to help with whatever tasks weaken them.
3) Open up a job opportunity for them within their health limitations.
4) Take them out for a meal.
5) Invite them over to your home for a meal and game or movie night.
6) Have a fundraiser to support medical and treatment costs their government refuses to help with.
7) Listen more than talking. Give them an opportunity to vent about how their chronic illness affects them.
8) Allow them the opportunity to do what they can.
9) Encourage them that their struggles can be used to open the eyes of others to the effort, discrimination and confrontations the chronically ill go through.
10) Respect the chronically ill by focusing on their strengths, not their weaknesses.
Please reach out to a chronically ill person today. Say, “I care about you. I will be there for you. You are not the lies you have been told. You are a beautiful creation of God. You are amazing! Your enduring faith and strength inspires me. No matter how awful your illness gets I will be there for you. I will not abandon you.”
You possess within you the ability to change a chronically ill person’s life, to add beauty and even joy to it by simply being the beautiful person that lives within you.
Never forget that your gifts of compassion towards a chronically ill person also give you a present that will only grow and blossom — a heart that cares and never goes away.
Kevin Osborne, BTh. with honours, D.D. , D.sc., Diplomate in Creative Ministry is a certified Christian counselor and Certified Professional Christian Coach training to become a Christian psychotherapist and minister.