An open letter to all people with challenges

being disabled doesn't have to be a diadvantage

Dear readers:

I felt a tug at my heart that all those who have challenges whether visible or invisible needed a message to uplift you. I think that in all frank honesty, I am writing this letter to help me in my own struggles.

Each one of you has a unique gift to share with a hurting world, who needs your voice. What is it that gives you your greatest joy in life? What would you like to do that you would do even if you never received any pay for it? Find your passion and in time the opportunities will come.

It’s okay to cry when life is getting you down. People need to see the real you. Those who expect you to always present a smiling face in your times of struggle are not living in the real world, where pain and suffering are realities.

Shine your light wherever you are. Your enduring hope can be your greatest asset. Positivity is infectious; it can be the fuel that inspires others in their struggles to keep pressing on.

Don’t give in to others who say you can’t do a thing. That is when you must show that there is no back up in you. You will not give up.

In my own struggles with a rare progressive neurodegenerative disorder that affects my mobility, breathing, ability to understand what others are saying and at times my speech and swallowing, I have learned to value each day as a gift. None of us are guaranteed even the next second of life.

I also have sleep apnea. When the power went off multiple times a few nights ago, I woke up gasping for breath because my device to help me breathe called a CPAP(continuous positive airway pressure)machine kept shutting off. I woke up exhausted. I was reminded just how precious a gift that breathing is.

Your life is a valuable gift to others. When you are reminded by your critics and even those who love you, what you can’t do, let that give you the courage to show what you can do.

I know I would have given up many years ago without the love and support of my beautiful wife, Karen. I know she wouldn’t want me putting her on a pedestal. Every day as we live with each other, we are reminded just how much we are both a work in progress:)

Karen has stayed by my side even as so many people said she should dump me. They remain convinced that I am nothing but a weight to Karen with all of my health challenges. They cite their belief that I will never have a job. They say I am weak. Many of you already know that Karen stayed with me through eight intubations for allergic reactions. Karen has stayed by my bedside laying her weary head on the bottom of my bed, while sitting in a hard ER chair. She has shed so many tears. Karen remains in a constant state of vigilance as we battle me also having what doctors say is a rare auto immune condition called mastocytosis or mast cell activation, which causes me to have too many mast cells. These are the cells that form part of your immune system and are in your tissues and organs. There is no known cure for the condition. Karen calls it allergy on steroids. I tell people that the mast cell attacks I have are a neighbourhood block party out of control.

Those who know me and love me would come to my defence. They would argue that I am the opposite of the limited perceptions of some people. All of us whether our challenges are seen or unseen as is the case with mental illness, have our struggles. It is important to remember that our challenges don’t define us. You are not your conditions. You are unique. There is no one quite like you.

The last piece of advice I would offer is don’t think you are weak because you need help from others. Perhaps, those who love you are just waiting for that call or email, so they can do something to give you that strong arm of support you need.

In less than three weeks in Ontario we will be voting in the provincial election. I would offer this advice to the politicians. Don’t give those on disability less help. Don’t take away their supports to justify a more positive bottom line. Give those with visible and invisible challenges that strong arm up they need. Give them all the medical and vocational help they need. Seek out the advice of those on disability. They have much wisdom and ideas to share about how to make Ontario a province where people with disabilities can have the opportunity to participate in society.

Keep your head to the sun even when the dark clouds come. You just never know when that smile, handshake or an encouraging word could be all that is needed for someone to not give up on life.

These are some of my thoughts. Please feel free to share your own.

Keep shining your light. It is your greatest asset.

Don’t underestimate the healing power of laughter. Those who laugh have a powerful tool in life’s most challenging circumstances.

Never forget that you are an amazing person!

Kevin

http://osborne2029.wordpress.com/

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About osborne2029

I enjoy spending time with people just having a coffee or talking about life, philosophy, religion, politics or sharing a favorite joke or story. We learn from one another as we interact and share our joys, challenges and even our times of sadness. I enjoy reading, writing, singing and sharing in the blessing of community whether that is one on one or in groups. I'm married and am powned by two kitties named Sir William of Lounge a.k.a. Sir Lounge a Lot and Princess Catherine of Chaos a.k.a. Her Royal Highness Catherine of Englehart. I m in an M.A.-Ph.D program with St. James the Elder Theological Seminary to train to become a psychotherapist and priest. Let us pray for and reach out to each other with kindness, love and an embracing compassion. We can working together be servants with two open hands to those in need so that hate, indifference and inequality would lose and love will win. The peace and abounding joy of our Lord Jesus Christ be with you.

Posted on May 29, 2014, in On Loving Others and tagged , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. 14 Comments.

  1. Your heart-felt post was touching and so sincere. You are a strong, amazing man with a wonderful, supporting wife. A priceless blessing. Thank you for your words of encouragement. Be well friend!

    • Hi Catherine

      I love your fighting spirit! You have an inspiring blog that is real, open and so supportive of others in their challenges. That’s a busy schedule being married and caring for three boys.

      Karen and I are moved so deep in our hearts at your touching comments.

      I pray this open letter will reach so many people right where they are at. I believe that God meets us right where we are. He hears our inner pain. He knows us better than we know ourselves. With all of our imperfections our Lord showers us with His amazing love. He is there in our doubts and our fears.

      I am so elated that you were encouraged by what I shared.

      You be well too friend!

      Kevin

      • Your post, no doubt, is/will touch the lives of many Kevin. The love and support you receive from your wife, Karen, makes managing your disease a little easier. God continues to do amazing things, your blogging is one of them, our paths crossing is another. Enjoy your day! 🙂

      • Good morning, Catherine.

        Thank you for those touching words. I thank my Lord for Kingdom energy for Kingdom tasks. I see that God uses that as a witness to others.Karen is quite supportive. The caregiver needs a break. I’ve put my foot down and said to Karen that she is taking a respite from caring for me. I don’t want her doing any work. I just want her to enjoy sleeping in, eating when she wants, and being good to herself. Catherine, she’s so exhausted and worn down. I tell her to give herself permission to have Karen days. It’s helping. The magnitude of her burnout will require several respites. In fact, we both got worn down advocating for the care I need. It shouldn’t have to be this difficult to prove your need for help with P.S.W. support care. No one should be put through all the hoops you are put through justifying your need for help, especially when I did all the assessment tests that indeed did prove our need for help.

        The system needs to be more compassionate. They need to ask themselves in support care how they would like to be treated if they were in need of care.

        I believe that God worked through people like my pastor to advocate concerning the help we need. Thank God for our pastors, who are there for us in our time of need.

        Have a Son-filled week!

        Kevin

  2. You are an amazing person and blessed are those who are a blessing unto others 🙂 hope you have a lovely day.

    • Thank you for the touching comment.

      I like this thought you share on your blog. I will be following your blog as time allows.

      R.I.P Dr Maya Angelou
      Posted on May 28, 2014
      She blessed the world using only words so powerful and true. R.I.P to a phenomenal woman.

      “People will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou

      We will never forget how you made us feel.

      If we all lived that way what a beautiful world it would be!

      Bountiful blessings!

      Kevin

  3. Wow, you are an amazingly brave man, you are so blessed and kind to share this, to help others. Treasure Karen, what a formidable team you make. I am vaccine damaged, I have MS, fibromyalgia, CMT a muscle wasting disease, and a broken heart. I have no physical help from anybody and am awaiting a brain scan to see what is going on in my frontal lobe, something very unpleasant. People like you are the reason I love this wordpress community, you fill my heart with HOPE, and you guys restore my shattered faith in human nature. I am struggling but everyday I count my blessings and there are many to count. God bless and thank you so much for your blog post today, it has helped me a lot. Wishing everyone a lovely day, Su x

    • Hi Su

      Thanks for these thoughts. Keeping you in our prayers for the upcoming brain scan on your frontal lobe. The uncertainties of our lives are the most challenging. I commented to a professor in Christian counselling that uncertainty is the greatest stress of life. How do we face all of its unknowns? Where is God in all of our uncertainty? These are the questions which many of us ask. What I can share from my own life is that before the diagnosis of my pernicious anemia (B12 deficiency), I and those who know and love me were living with all those unanswered questions. Why is Kevin collapsing so much? Why is he looking sicker and sicker? It took over a year and a half of testing by an Irish doctor with the dogged persistence of Sherlock Holmes to find out why I was dying a little more each day. The condition occurred at birth, but was diagnosed 38 years into progression. I have permanent damage to my body because of this barring divine healing, which I never rule out.

      Just before the pernicious anemia was discovered I was sleeping at least 17 hours a day. I kept losing weight. I collapsed over 40 times in two years.

      My personal journey can be read in under five minutes – “A Boy’s Calling to be a Missionary of the Heart.” Perhaps, something in it will be uplifting to you in your own challenging journey.

      http://osborne2029.wordpress.com/2013/08/13/a-boys-calling-to-be-a-missionary-of-the-heart/

      Lord, pour out the river of Your richest blessings into Su’s life. Be with her in all of her challenges, struggles and the unknowns of life. Karen and I pray the brain scan will find out what is going on with her frontal lobe. Send many more loving and caring people into her life, who she can depend on more. Father, than you for bringing Su into our lives. Her thankful heart in all situations reminds all of us that even in our darkest struggles You shower blessings upon us, even when we are so mired in our circumstances that we fail to see them fully. Amen.

      The Lord bless you and keep you. The Lord make His face to shine upon you and be gracious unto you. The Lord grant you His peace now and forevermore.

      Keep fighting the good fight!

      Kevin

  4. Reblogged this on Outside The Box and commented:
    Wow, you are an amazingly brave man, you are so blessed and kind to share this, to help others. Treasure Karen, what a formidable team you make. I am vaccine damaged, I have MS, fibromyalgia, CMT a muscle wasting disease, and a broken heart. I have no physical help from anybody and am awaiting a brain scan to see what is going on in my frontal lobe, something very unpleasant. People like you are the reason I love this wordpress community, you fill my heart with HOPE, and you guys restore my shattered faith in human nature. I am struggling but everyday I count my blessings and there are many to count. God bless and thank you so much for your blog post today, it has helped me a lot. Wishing everyone a lovely day, Su x

    • Hi Su

      I am filled with joy that this piece is reach many other people through you reblogging it! Thank you for your thoughts about me. I do value Karen. I will let Karen know about the so many wonderful things you have said about her. We would want to be thought of as servants of our Lord, who stumble and fall and by God’s amazing and enduring grace, we get back up again.

      You have much to contend with in your medical journey. Let us pray for each other that God would bring us all to higher levels of healing.

      I echo what you said about how there are times you have a shattered faith in human nature. I really hear what you are saying. People can let us down. Sometimes, those we trusted stab us behind our backs with their cutting surgical comments or ill-thought words.

      I’m really glad this piece has uplifted you.

      I open you up to the river of God’s richest blessings!

      Kevin

      • Thank you Kevin so much for your lovely reply and you are more than welcome, I felt I had to re blog and share your post.

        Thank you also for your prayers, that means such a lot to me it really does. I’m very lacking in Christian fellowship and feel a bit in the wilderness. I’ve been here before and I know The Lord is right here with me as He always is and has been.

        I don’t go to church etc but since I was 13 my faith has been my cornerstone and without it I’m sure I wouldn’t be here now.

        The beauty of having such a strong unshakeable faith is that no matter what we go through or how difficult life’s challenges are, it is His will. He is the artist sewing a beautiful tapestry but we only see the side with all the ugly straggly bits, one day we will be in awe at the work He is doing when we finally get to see the other side.

        Nothing would ever rock or shake my faith Kevin, I trust him implicitly even if He does pee me off and test my patience.

        Much love and blessings to you both and I’m truly thankful for your prayers.

        Take great care, God Bless, Su x

      • Hi Su

        Your beautiful and enduring faith inspires me in my own struggles.

        I do believe in the importance of having our Christian brothers and sisters to support us through our struggles.

        Su, if we were to be truly honest about it, there would be many people who would say they get angry with God. I think the problem for us is that often without thinking, we try to fit God into what we think our understanding of Him should be. We want Him to act right away on an issue. He takes His own time to do that or leaves us to use the beautiful minds He gave us, to come up with solutions to our problem.

        As I look at my own walk with my Lord I reflect upon so many times He has really ticked me off. I would say things like this to Him in my thoughts. “Lord, why aren’t You helping me get all the medications I need for my health? Why did you give me such a challenging journey? Why do You let me see the stress on Karen’s face about our strained finances because of the medications my government refuses to cover? How much do You think we can take?” My questions are the questions many Christians ask and even more than these.

        Many of us struggle with what our minds believes and our hearts struggle to accept. Somewhere in all of those questions God is there. He is meeting all of our needs in ways we may have yet to see.

        Su, Karen and I will keep you in our prayers. We both have been given full plates to handle. Yet, when I ever think our circumstances are so overwhelming my Lord brings into our path those who have even heavier crosses to bear such as malnutrition or parents seeing their children die a slow and agonizing death from hunger. Su, I know a pastor in Malawi whose family misses one or more meals a day, because they are too poor to have three meals. That is a tough road to walk. They are walking that road with a strong faith in their Lord, which gives me much pause for thought and prayer.

        We get so caught up in the Church on church being the four walls of a building. Let us all think where Christ held His church. The Beatitudes were not delivered in a huge church. People were outside. That is where our saviour drew the large crowds of people, not in the synagogues.

        Church is not a building; it is in the hearts of people who believe God and even those who do not. It is for the believer, the searcher and those grappling with their faith. It is in each heart that truly cares and reaches out to the needs of others.

        Shalom,

        Kevin

  5. Kevin, this is the most beautiful piece you’ve ever written. I have an invisible challenges and it makes me think I’m weak and totally worthless. I admire Karen for the kind of woman she is. Reading your article I can’t help but say I am just like you who needs people like Karen. I want to thank Karen for not giving up on you. I dont have much to say but today I am convinced that I still can make sense with my life and that I could still make a difference in the life of others. Thank you.

    • Hi Marmar

      Thank you for taking time to share your thoughts. Karen is a pretty special woman, a blessed gift from my Lord.

      I’m filled with joy that this piece moved you and really spoke to you in your own journey. When the Enemy tells you that because of your challenges you are worthless, remember these truths. You are a child of God. You are perfect in the eyes of your Father because He made you. You are a compassionate soul. Many people love you. The Lord has gifted you for the unique calling He has on your life. God will give you all the mentoring and training He wants you to have.

      Marmar, always remember that the Lord led you to start this blog. He has brought all of us here to be co-authors on Mind’s Seat. We are a beautiful fraternity of faith and support to each other. We’re not perfect. Our Lord is working on all of us perfecting us in our own unique journey of loving others and understanding ourselves and our calling.

      Marmar, every day you wake up and shine your light of love for Christ to others, you are making a positive difference in so many lives! Think of all of the lives you are impacting for the Kingdom through the pieces you write.

      You have expressed that you think you aren’t that good of a writer. I firmly disagree. I know many others would affirm you in just how awesome a writer you are. The best writing speaks from our own journey of the heart. You speak God’s language of love and acceptance through all of your pieces. They both encourage and challenge. You aren’t afraid to say what is on your mind, even if it is an uncomfortable truth for some to swallow.

      Your writing style is understood by a large cross-section of people. Yet, it has never once talked down to anyone. The images you use connect with people, much in the same way as Jesus used every day objects to teach a deep spiritual truth.

      You are a strong man of God. You are a leader. We follow you because we have such great love and respect for you. You trust us to write pieces that will cause people to focus on God. You encourage us through what you write to be bold in what we say when it is led by the Holy Spirit.

      Marmar, far too many in Christian media fail to say what really needs to be said, to be willing to speak that hard truth. Never change that focus for anyone. We are called to be Truth speakers. God’s Truth, open, honest and unpolished, that doesn’t give itching ears what they want to hear. It would be far easier for you to have a middle ground kind of blog that appeases the multitude. Those who follow this blog or visit come because you allow all of us to speak the truth of our Lord they want to be uplifted, loved, edified, encouraged and challenged by.

      I pray that all I have said has made you feel that your life makes a beautiful and awesome contribution to God’s Kingdom!

      Thank you, Lord, for the blessing that is Marmar. Amen.

      Kevin

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