A high tolerance for pain.

One day, I was working with an acupuncturist and she was burning incense on the palm of my hand. She told me to let her know when it gets too hot and she would remove it, but to try and keep it there for as long as I could. Well, I kept it there as long as I could letting the incense burn all the way through to the skin. She asked why I waited so long? She had said to keep it there for as long as I could and that's what I did! I kept it there much longer than a normal human being would have done. Why? Because I have a high tolerance for pain.

There are different kinds of pains that I get from living with MS, and some are worse than others. They can range from aches to extreme itching to deep nerve pain. I know that I can count on experiencing at least a couple of them every day. I also know that when I'm feeling pain, that it will go away. For me, I think that knowing it will go away is a big part of tolerating pain.

Don't get me wrong. I feel the pain. I grit my teeth's and sometimes writhe in pain. Occasionally I will let out a few expletives. So it is not that I do not feel "the nail going through my foot”. I do. I am just able to tolerate it. Again, knowing that it will go away is a big part of how I tolerate pain.

Pain can be more than physical. There also emotional pains.  Pains that one experiences when they or someone close to them are diagnosed with an illness. Pains that are felt when a family member or friend or someone important to them passes away. I seem to have a high tolerance for these pains too. The questions are how and why.

The answer for emotional pain is partially the same as it is for physical pain. I know that it will go away. “Time heals all wounds”. The cliché is always true, but there are other ways that I deal with the emotional pain.  What seems to work best for me is gratitude and perspective.

I was very close with my mother. She was an extraordinarily active and vital woman who spent her life taking care of other people. She took care of her mother, her husband, and did everything she could to take care of our family too. But it did not stop with family. Whenever she saw or met someone that she thought she could help, she did. She also died at the age of 68.

Dozens of people responded to her death by saying “she was so young”. My response was that 68 is not young. It is just not a particularly long life. In fact, we were lucky to have had her for as long as we did.

She was not young. It is just that her life was not long enough. Her life wouldn't have been long enough even if she lived to be 120 years old. For me, the best way to accept her passing was to be grateful for all the years that I had with her.

The best way to deal with pain, be it physical or emotional, is gratitude. Grateful in knowing that the physical pain will go away. Grateful in knowing person for as long as I did.

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One of the best weekends ever.

 Almost two weeks ago I told you about our pending trip to Dallas. Now we are back and all that I can say is that my experience was much greater than anything I ever could have imagined. The event, the National MS Society's Annual Leadership Conference, started on Thursday and ended on Saturday and in between were general sessions, breakout sessions, gala dinners, entertainment and more than 500 of the nicest, kindest and most caring people that you could ever meet.

Then it occurred to me. “Of course they are nice. After all, this is a cause.” The people who work for the MS Society are a kind and caring bunch, otherwise they would not work there. The people who volunteer and contribute at this level are kind and caring, otherwise they wouldn't be there.  To be immersed, among and gathered with all of these people was an absolute joy. It was a great thrill for me and a weekend that was filled with  praIses and accolades. I do not know if that is because of the job that I did or because they are so darn nice. Either way, it sure felt good.

 There were X Games Gold Medal winners, Clay Walker, David Osmond and a very talented 10-year-old girl who brought the house down when she sang “the Climb”. There were astronomical fundraisers who have raised millions of dollars for the society, activists who have helped make great changes in how Medicare treats those of us living with MS. There were students who were scholarship winners, researchers and clinicians. Barbecues, cocktails and a video being shot that had everybody singing and dancing.

 In other words, it was fun, moving, informative and inspiring. It was everything that you could hope for at an event like this. It was without a doubt one of the best experiences of my life. My only hope is that someday all of you have the opportunity to attend an MS Leadership Conference.

 Who knows? Maybe next year we can all meet up in Denver at the next conference.

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To me it is a very big deal!

I feel like I've told lots of people about this. Yet, almost every day I realize that I've left somebody out and the fact is that I want everybody to know.

 In mid-August I was contacted by the National MS Society. Not the local chapter where we normally direct a lot of our time and attention, but the Big One, the Parent, the Behemoth, the “national” National MS Society asking me if I would co-emcee their National Leadership Conference to be held in Dallas next week. Me?  They were asking me? There are a lot of Michael Gerbers in the world. Did they really mean me? They did and there have been very few times in my life where I have felt so honored and excited to be asked to participate in something. This was one of those times.

 As the song says "Our bags are packed. We're ready to go.” We are actually leaving a few days early to visit a very close friend in Austin, which we are also excited about. In fact, it will be a reunion for four us who have known each other for more than 35 years and who live in different cities across the country. Then it is off to Dallas for the really big show. An opportunity for us to meet and greet the real movers and shakers behind the MS Society. Individuals who have raised more than $1,000,000, companies that have raised millions of dollars, researchers who are at the forefront of the progress being made to lead us to a cure and the management and staff of the Society that make it all happen. 

 “The journey of 1000 miles begins with a single step.” Our journey is thousands of miles (round trip, that is) and begins with an airplane ride. I promise to share some of the details when I return. Until then, I trust that your good wishes are with me as mine are with you every single day.

 Participate. Make a difference. Live a life that matters.

What I stand for. What we walk for.

I have not stood or walked for more than 18 months.  

What you may not know is that I will stand and walk again soon. No kidding. I have found what may be the world's greatest physical therapist. I have worked with more than a dozen therapists in the past few years, but they pale in comparison to Emily. She is extraordinary, extremely knowledgeable (bordering on being a nerd) and also has an incredible spirit, always positive, very encouraging and is someone that I look forward to seeing several times a week.

Fortunately for me I am in a position where I can commit to seeing her 4 days a week. No, my insurance does not pay for it. It might pay for much of it if she took Medicare, but she does not. She used to, but the paperwork became so burdensome that she had to drop it. Private insurance will typically pay for about 18 visits per year. When going 4 times a week, the 18 visits get absorbed very quickly. So I pay for it. It is expensive for us and we do it anyway. She does give me a great discount, much less than Medicare would pay her, and I am very grateful for that.

The bottom line is this: I will stand and walk again.

Not everyone with MS who has lost these abilities can say that. I can. I am living proof that the right physical therapist and a whole lot of determination works.

 When we started therapy, she carefully examined my legs and determined that my muscles were very small and very weak. But I still had muscle, enough to build on and that is what we have been doing for the past several months. My leg strength has improved dramatically, I am able to straighten my leg more than I have been able to do for the past few years and my core continues to become stronger with every passing week. Now we are at a point where I am standing. It is not pretty, but it is beautiful. Click on the video below and see for yourself.

The amount of work involved to recover those abilities is great. My therapist, has a rule of thumb. The time required to regain those abilities,  may be equal to the amount of time spent in the wheelchair. Based on her rule of thumb, I have 10 more months to go. Baloney! I am determined to do it sooner and prove to the world and myself that it can be done.

Proving this, exercising my influence over this disease, is what I am determined to do. It is what I stand for.

The good news is that I do not stand alone. We have one of the largest teams at the Greater LA Walk MS event which takes place Sunday, April 15^th. Last year nearly 10,000 people showed up for the Walk and it was something very special to be a part of. Nearly 100 people showed up to walk with us on our team, the JiggyWiggits Some of our friends walk, some give money, some do both. What they all do is participate and that makes all the difference in the world to us.

This will be our 6th year of participating in the MS Walk. What I have learned is that everybody I know wants to do something to help and often they do not know what they can do. The MS Walk gives everyone something to do that makes a difference. There are about 600 MS Walk events that take place from coast to coast. In other words, there is a Walk taking place near everyone you know.

These MS Walks raise millions and millions of dollars for the National MS Society that are used to support research, programs and services for people living with MS. This is this money that will lead us to a cure and better treatments.

This is the money needed so that no one will ever have to learn to walk again. This is what we walk for.

Please join us and support the JiggyWiggits. Visit our website and join our team. Come and be a part of something special or support us with your generosity. It can and will make a difference.

Participate. Make a difference. Live a life that matters.

New Year's resolution: Meet Michael J. Fox

Michael J. Fox is one of my heroes. This is not because he is famous or one of the world’s great actors, although he is very good. It is because he uses the power of his celebrity to do good in the world. He also maintains an extraordinary attitude while living with a chronic disease.

A few years ago he wrote a book: "Always Looking Up: The Adventures of an Incurable Optimist”. What a great book. It is about his life and more importantly about living a happy, productive and full life in spite of living with a chronic illness: Parkinson's disease.

I wrote him a letter and received a form letter in return. Silly me. He probably receives hundreds of letters every day from his fans and my letter was just like all the rest, but not to me! In it I explained that while he may be suffering from "Incurable Optimism", I was living with a condition that is far worse. You see, I have "Chronic Euphoria”. The doctors have told me that I am far too happy for my circumstances and that there is no treatment.

That is what my letter to Michael J. Fox was about.  Not your typical fan mail. I would love for him to read it and, if the opportunity is made available, would love to meet him. I am hoping that somehow, someway we can get this letter to him. So I am asking for your help. If you happen to know that "McFly" guy, or knows someone who does, would you please pass my letter on to him? The letter is posted below.

LESSON: If you don't ask, you don't get.

I will let you know what happens….and thank you.

Dear Michael;

While you may be suffering from Incurable Optimism, I live with Chronic Euphoria. The doctors have told me that I am far too happy for my circumstances and there is nothing they can do.

                                     

My condition is a challenge for me. I have to wake up happy everyday and am not able to see my world as a glass that is half-full. Instead my glass is always over-flowing. I have more blessings than I can begin to count and have had to hire a new accountant to help me do that.

Next week I am seeing a cardiologist because my heart is always full. Then, I am going to the ophthalmologist because I seem to be having a problem with my perspective.

Clearly, my condition is much worse than yours……..don’t you think?

Thank you for taking the time to read this letter. When I heard about your upcoming show, immediately I wanted to write to you and say “Me too”. Like you, I live with a disease, multiple sclerosis, that has greatly affected my physical abilities. Yet living with a disability has taught me about gratitude, much more than I ever could have learned in a life without incident. Again like you, these past several years have been some of the happiest years of my life.

We are not alone. I have found many people, often severely impaired by their disability, who have discovered the key to waking up happy every day of their life: GRATITUDE. That is my theory and philosophy. I imagine that yours is similar.

I also have a confession to make. You are one of my heroes. I say that because you have and continue to use the power of celebrity to do good in the world.  You are a visible representation to the world of what it means to be alive, functioning and living with a disability. My goals is to increase the visibility of disability. You do that today.

I am not in the entertainment business, but have met a number of celebrities over the years. Truthfully, I am not impressed by someone because of their status. But, rather who they are as a person, who they are in the world. You, sir, are someone who impresses me. If the opportunity was made available, I would be thrilled and honored to meet you.

With warmest regards and my very best wishes,

Michael B. Gerber

Cell (213) 804-1249

michaelbgerber@gmail.com

www.mgerber.blogspot.com – “Perspective Is Everything”

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How to be beautiful

One of my favorite greeting cards reads "For your birthday I was going to get you a day of beauty for $175. But all I could afford was a day of relatively attractive for $35."

Just a couple of weeks ago I went to the movies with my wife and my travel companion, my wheel chair. While there a woman approached me and much to my surprise said "You're beautiful. Oh my God, you are beautiful" and then began to awkwardly apologize. She went on to explain that she wasn't used to seeing attractive people in a wheelchair, but I think she was saying much more than that.

I am not beautiful. There are no beauty pageants in my future. No one has ever come up to me and said that before. What she was really confessing was that her image of a person in a wheelchair was of someone 'unattractive'. That a wheelchair somehow suggested a deformity or disfigurement and thankfully, I don't have either of those. What I do have, and many of us with disabilities have, is to have combat those expectations of being unattractive, deformed, mentally incompetent (STUPID), hard of hearing or somehow less than ``the more able bodied occupants of our planet'.

So let me tell you what I do. I smile at people and say hello. I start conversations with strangers. I make it a point to be seen as the happy guy in the wheelchair….whether at the movies, the grocery store, the doctors office or the airport. Some of the places we go to regularly know me for that and if I have somehow changed their expectations of a guy in a wheelchair, than the world is a nicer place and we are all better off.

Do smiling, saying hello and being friendly make someone more attractive? I think so and apparently the woman at the movie theater thought so too.

Whether in a wheelchair or not, become known as the happy guy. Change people's expectations of how people are and how you are. Smile, say hello, ask a stranger "how are you today" and see what happens.

My guess is that before too long, someone will tell that you are beautiful

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The power of the internet to do good. More about Chelsea's Hope

I wrote a blog about 18 months ago called "What if it was your child?' It is about my niece, Chelsea who has an extremely rare and always fatal condition called Lafora Disease.

It is so rare that there are only a couple hundred known cases worldwide. There is also no treatment and no cure. Here is what we know about Lafora today:

Kids are typically diagnosed in their early teens

The mental and physical deterioration occur rapidly

No one with Lafora has lived to be 30 years old

Life expectancy is usually about ten years from the date of diagnosis. Chelsea was diagnosed almost six years ago.

What does all this have to do with the internet? Plenty.

Increased awareness means increased funding for research and treatment. Chelsea, or rather Chelsea's Hope, a non-profit organization founded by  her incredible parents is now in the final round of a contest sponsored by Toyota. 

If we win, a car will be decorated and dedicated to Chelsea's Hope. To win we need votes which you can do every day until May 1st. We need your vote.  We need your friends to vote. We need you to go onto Facebook or MySpace or Linked In or whatever social  network you belong to and help us generate as many votes as you can. That is the power of the internet to do good in the world. But if we do nothing, nothing will happen.

Voting is simple. Just CLICK HERE.

To learn more about Chelsea's Hope, CLICK HERE.

To make a difference I the world, TELL A FRIEND.

That is the power of he internet to do good in the world. I hope you will help us to do that.

Participate. Make a difference. Live a life that matters.

The Medical Report

I remember laughing. It was almost 30 years ago and if you called my mother-in-law and asked “How ya doing?” you got the answer, the whole medical report whether you wanted it or not. Well, here it is, almost 30 years later and if you ask me, or my wife, or most of our friends “How ya doing?”, you are likely to get the whole 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.

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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.

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.