Living with a disability - What a blessing. Thoughts and lessons learned along the way. Written by Michael B. Gerber
Sunday, September 26, 2010
The Medical Report
What happened? We got older. More importantly, our bodies got older too and with aging bodies comes more ailments, diseases….and medical reports.
The truth is that those we care about and those who care about us want to know how we are. It’s more than a morbid curiousity. But rather an “I made it” –“Did you make it too?” type of curiosity. The fact is that we are getting older and to me, that’s the good news.
For many years I have said “If we are lucky enough to live long enough, we will all have something to deal with.” That’s the good news. It means that we have lived long enough to have something. That’s life and I would rather have it than not have it. Some of us are ‘lucky enough to have our health issues earlier…..like me.
God willing you are in your 50’s, 60’s, 70’s or older and are healthy and strong. What a blessing. But chances are that if you have lived that long, you know someone who has had to face serious health issues and chances are that when you ask “How ya doing?”, you really want to know.
Little did I know that way back when I asked my mother-in-law “How ya doing”, the meaning and significance those three little words would take on not that many years later.
Participate. Make a difference. Live a life that matters.
Saturday, September 4, 2010
Eating Children.
The title of this piece is correct. It is about eating children.
Many, many years ago when my kids were born (now 26 and almost 28 years old), I wrote poems. Some of you may identify with them…..or at least I hope so. For years people have told me to publish them. So here are a few of them.
WARNING: Some are about eating children.
My Daddy’s Trying To Eat Me!
He’s nibbling at my feet
He’s chewing on my fingers
And telling me I’m so sweet
My Daddy’s Trying To Eat Me!
He’s sucking on my cheek
I am getting smaller everyday
I think I’ll be gone next week
My Daddy’s Trying To Eat Me!
I can tell from his kiss on my head
Because I am sure that what he’s doing
Is taking little bites instead
My Daddy’s Trying To Eat Me!
He calls me his Little Lamb
That’s a favorite food of his
And he thinks that’s what I am
My Daddy’s Trying To Eat Me!
He calls me his Sugar and Spice
I guess that’s the price a little girl pays
When she tastes so nice!
By
There’s A Baby Inside That Lady’s Tummy!
There’s A Baby Inside That Lady’s Tummy
And she won’t let him out for nine months
She won’t let him have toys,
Or make any noise
Or even watch TV, not once
There’s A Baby Inside That Lady’s Tummy!
And we’re told that she eats everything
From the way she is showing
And her tummy is growing
I’ll bet that she’s bursting a seam
There’s A Baby Inside That Lady’s Tummy!
And you better be fast on your feet
Because inside her belly
It stretches like jelly
And you’ll be the next one she eats!
By
If kids were cookies
I’d the fresh every single day
I’d like to know how many kids
That I could put away
Yes, I’d eat these kids with ketchup
And even day old stew
Yes, I’d eat them by the dozen
If kids were cookies too
And when all the cookies are eaten
I kkn1ow just what I’ll do
I’ll make the rest into Kiddy Cake
And Kiddy Jello Too
By
I hope you enjoy these. Feel free to pass them on to new or expecting parents. I always do and they seem to enjoy them.
Friday, August 20, 2010
You know you have a great mom when........
Great Moms are committed and preoccupied with the well being of their family, especially their children. They are selfless, generous and always doing for others. Often they will cook, clean and make costumes for the First Grade Circus. Sometimes they are just plain nuts (like my mother who used to do a trial run of her Thanksgiving dinner the weekend before. Who wants to do that twice???). They are there to comfort and protect us. It is their role, the reason they are here.
If a child is sick, they will move mountains or dig ditches to find a treatment or cure. The word “No” is not in the vocabulary of a great mom when it comes to caring for their children.
Great Moms reach extends beyond their own family. They are often ‘maternal’ to and towards a lot of people, regardless of their age. They counsel, advise and care for everyone close to them and seem to have an endless supply of band-aids, hugs and kisses for anyone who needs one.
Usually girls learn to be women from their mom and in today’s world, boys often learn how to be men from them, and I don’t think that is a bad thing. They are teachers, playmates, nurses and disciplinarians. They are God’s gift to us all. Perhaps they are his angels on earth.
I know all this because I had a great mom. If she were alive, today would have been her 75th birthday. She died of cancer almost seven years ago and although she is no longer with us physically, she certainly left her mark on our family and she is often spoken of. Her presence is known and felt in our home. I think of her everyday.
My mom and I were close and spoke often. We saw her regularly and she was a big part of our family and lives. Now that she is gone, I don’t think that I gave her all the credit and attention she deserved. Maybe no Great Mom gets all they deserve.
Happy birthday, Mom. You will live forever in our hearts.
Wednesday, August 4, 2010
Marital Advice From An Expert.....Me!
Ask couples who have been married many years what the secret is and you will get a variety of answers. “Respect”. “Friendship”. “Never go to bed angry”. All good answers, all valid. But I believe that my answer to the question trumps all of those answers.
My advise is different and if you follow it, all those other pieces will fall into place. My advise is to be grateful.
Remember why you fell in love and all the things about your partner that you are grateful for and tell them. By telling them you remind them, and yourself, of what it is you love about them. Gratitude is the key to happiness and to staying in love. Unexpressed gratitude is useless. It must be expressed. Otherwise it is like buying someone a present and never giving it to them. Useless.
The opposite of gratitude is taking things for granted. Whenever things go awry in a relationship, one of the parties always feels taken for granted. Don’t let that happen.
Make expressing gratitude a habit. It has taken some of us a long to learn this, but I can tell you from personal experience that it works. Gail and I just celebrated our 30th anniversary, and I can honestly say that I am more in love with her today, then I was on the day we married and I am more grateful too. Rarely does a day go by without me telling her that I love her and why. And guess what? She does the same with me.
The last several years, and in particular, living with a disability, has taught me more about gratitude than I ever could have learned in a life without incident. But don’t wait for a life changing event to learn these lessons. Remind yourself, and your partner, today why you fell in love and do it all over again.
You, and your partner, will be glad you did.
Happy anniversary, Gail. I love you more today than yesterday.
Participate. Make a difference. Live a life that matters.
Tuesday, July 27, 2010
It takes a village…..or at least it’s better that way.
There are always at least two ways to do everything. Right or wrong. Good or bad. Alone or with others.
I like to do things with others. In fact, I am certain that my life is better because of all the people in it. I can say with certainty that as a person with a disability, my life is also easier because of all the people in it.
If I need help, someone is there to help. If I need someone to talk to, someone is there to listen. If I need a laugh, someone is there to play with or share a joke. When I am there to listen to someone else, than I know that I am of value to another person.
Having people in your life and being involved with others is a great reminder that you are alive and worthwhile. It can also help one forget about their troubles for awhile and that is always a good thing.
I recently read an article about isolation (InsideMS /Healthy Living / Isolation) that was written by my friend Alison Dale. It turns out that isolation is a pretty big problem in our MS community and is often a problem for anyone living with a chronic condition. I am guessing that it is a problem for many people without a chronic condition as well. (Isolation can lead to depression and that can be a serious problem. If you or someone you know suffers from depression, please get help.)
There are many reasons why and how a person becomes isolated. Some may have to do with physical limitations or disability. Some with fatigue and sometimes it is just the belief that no one understands or cares. Whatever the reason, isolation means being alone and being alone is no way too spend all of your time.
If you are alone and don’t want to be, do something about it. Call a friend and invite them over. Go to church or temple and find ways to get involved there. Join a club or service organization. Volunteer. There are hundreds of ways to get involved with others and millions of nice, caring people in the world. Finding them is not difficult. It just requires a little initiative.
If you are not a likeable person, become one. Learn to ask questions of and about others and listen to their answers. Practice gratitude. Say hello to strangers and learn to smile. You will get back what you put out and will soon find that you have created your own community.
If you are not alone, go find someone who is. Make a difference in someone else’s life. You will both be glad that you did.
Life is better when you have people to share it with. For some people that may mean marriage or family. For others, it may mean friends or belonging to a group.
Having a full, rich, meaningful life requires people to be in it. In my case, it takes (or at least I have) a village.
Participate. Make a difference. Live a life that matters.
Wednesday, June 30, 2010
Rejection has never felt so good.
Is it the good news or the bad news? This past week and for the third time, I was turned down as a participant in a clinical trial. Getting into one of these trials as a volunteer/participant is tougher than I thought it would be. This time, however, being turned down was the good news.
This particular study was to see if exercise could improve the cognitive function of those of us living with MS. You needed to have a minimal level of physical ability and some evidence of loss of cognitive function. The doctor gave me a physical exam and then the Clinical Director administered a test of 60 questions to measure thinking skills and memory processing speed. The good news is that I answered 59 of the 60 questions correctly. A high score.
The bad news was that because of my score, I was not an eligible candidate for the study. Geez……..I may never get into one of these clinical trials.
More than half of the people living with MS will experience some level of cognitive dysfunction. Another fact is that over time, the great majority of us will experience some physical disability. Given a choice (which I am not), I would choose to have the physical disability over the cognitive disability every time. Luckily for me, that is how the course of my MS seems to be going.
Acceptance seems to be one of the best ways to live with a chronic condition….really, to live life under any conditions. By acceptance I don’t mean complacency or resignation. I mean accepting what is true, what cannot be changed and making the most out of whatever abilities I do have.
According to the test, my cognitive function is great. Will it always be that way? I can only hope so and can take steps to maintain the status quo, both mentally and physically. But if it changes, I know exactly what will do. Make the most out of whatever abilities I do have.
Will I ever get into one of these studies? I can only hope not.
Participate. Make a difference. Live a life that matters.
Wednesday, June 23, 2010
Doing the best we can Part Four: "Never Underestimate The Power Of A Smile"
I found what I hope is the perfect ending to this series on doing the best you can. It is a very short video taken from ABC News of a graduation speech given by a very special young man. The video takes less than three minutes to watch and shows us all the power of what can be done when we do the best we can.
Student's Inspirational Graduation Speech
Monday, June 7, 2010
Doing the best we can. Part three: Life and love.
That said, meet Dan and Jennifer. They met several years ago, fell in love, got married and have been happy ever since. A typical love story, except for one thing. They both have multiple sclerosis.
Dan has relapsing-remitting MS and it is not as severe as Jennifer’s (or mine!). He works, he walks and he jogs about three times a week. He also cares for Jennifer.
Jennifer has secondary-progressive MS. She cannot work or walk. But she is a caregiver to Dan, helping in every way that she can.
Dan and Jennifer have something else too. They have a tremendous spirit and attitude that propels them to make a difference in the world. As a result, they are an example to everyone who knows or knows of them.
Having MS does not stop them from participating. In fact, just the opposite is true. They lead and inspire others. They fundraise, advocate and speak. They receive rewards and recognition and are featured in articles and videos. They have even figured out how to dance together. They are alive, in love and living with a chronic illness.
They are not only doing the best they can, they are doing great.
I have never met Dan and Jennifer, but have been a fan for some time now. I am always touched and inspired by the things they do and their extraordinary love for each other. Read Dan and Jennifer's blog and learn more about them. Learn about two people doing their best in life and love and be inspired to do the best you can.
Dan and Jennifer have a prayer that say every night and part of it is as follows:
“Gracious God, help Jennifer and me to accept your will in our illness. As your children we believe that you cause all things to work together for our good, both of body and of spirit. But sometimes in the midst of illness and pain we forget or doubt. Forgive our weak faith. When we become impatient, encourage us by your word. Despite our worries and suffering, help us by our lives to reflect the radiance and confidence of those certain of your promises of help. Restore us to sound health if it be your will, and enable us with new vigor and enthusiasm to serve you zealously for many years to come. O Lord, have mercy. Hear our prayer. Amen.”
I think their prayers are being answered.
Participate. Make a difference. Live a life that matters.
Monday, May 17, 2010
Doing the best we can. Part Two. When is failure a success?
In 2004 she went back and made it to the top. She then decided to be the first person with MS to climb the highest mountain on every continent: Kilimanjaro, Denali,
A climb like this requires much more than physical strength and determination. Many of the obstacles are unknown and unpredictable until the climber gets there and discovers how their body responds. At over 17,000 feet, Wendy’s body could no longer tolerate the lack of oxygen and extreme temperature changes, all compounded and magnified by her MS. She did not make it to the top. She did not realize her goal.
Wendy has set an example for all of us. We all have ‘mountains to climb’. The questions are will we and will we do the best we can?
Participate. Make a difference. Live a life that matters.
Sunday, May 2, 2010
Do the best we can. Who could ask for more than that?
I spent 26 years in management and came from the school that said “you either have results or excuses why not”. It was an approach to managing salespeople in particular that did not allow for excuses, reasons and stories about why not. We wanted results and this approach is both valid and effective in that arena and in many areas of my life today. Yet today, my view seems to have changed….softened. There are some things that we just cannot do or control.
I bring this up because I recently received an e-mail from one of my new ‘internet friends’. I had asked him to participate in something and he responded telling me why he could not attend, then saying “I can see you shaking your head and thinking; excuses, excuses.” His response hit me like a punch in the gut. OUCH! Do I really convey such a lack of understanding or sensitivity? I hope not and trust that his comment had more to do with his knowing how active I am and then comparing himself to me.
Two issues are at stake. The first has to do with excuses and the second is comparisons.
Excuses
We all have excuses. We use them to justify ourselves for the things we do or don’t do; our reasons why or why not. The question we must ask ourselves is do our excuses keep us from doing the things we want to do and can do? Please know that I am less concerned with what others think of my, or your, reasons and excuses than I am with why I, or you, have them.
The first question we must ask ourselves is can it be done and then, can it be done by me, or you?
Comparisons
Maybe it is human nature, or some flawed instinct that many of us possess. Whatever the reason, to varying degrees we all tend to compare ourselves to others. We do this at the most superficial levels and without regard to other considerations such as physical health, socio-economic factors, genetics, personality and a whole host of other reasons that make us all different.
While it may be human nature, comparing ourselves to others is just wrong. We are each unique in a million different ways. The only person that I can honestly compare myself to is me.
Did I do what I said I was going to do?
Did I do as much as I could do?
Did I do the best that I could do?
If I needed help, did I ask for it? Did I get it?
Am I being the person I want to be?
I do a lot of things and very few of them do I do alone. I have an extraordinary support system that surrounds me and allows me to all the things I am able to do. Everyone needs support and help. Some of us just need more or different help than others.
My hope for you, for all of us really, is that if we need help or support, that we are able to get it and that we do the best we can do. Who could ask for more than that?
Over the next several weeks I will revisit this issue of doing the best we can. I hope to include stories of others who do amazing things and make a difference in the world. I hope you will check back and let me know your thoughts and stories……or at least, do the best you can.
Participate. Make a difference. Live a life that matters.