Daily Archives: May 29, 2014

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!