GENE'S DREAM TEAM...

GENE'S DREAM TEAM

Hi Everyone,

We would like to thank all of you that have taken time to show your love and encouragement to us, as we walk this journey with ALS. We are incredibly blessed to have so many people that care about us. Knowing that you care makes such a difference. Thank you, too, for reading our blog and sharing it with your friends and family. We have been overwhelmed by your response and show of love. Many of you have asked how you might be able to help us; that is the purpose of today’s post.

We would like to ask for your help in the fight against ALS! The Walk to Defeat ALS is The ALS Association’s national signature event. Each year, more than 100,000 people across the country, including ALS patients, their families, friends, and corporate sponsors join to increase awareness of the disease and to raise funds in support of The ALS Association so they can continue to provide their wonderful community-based patient services and to fund their cutting-edge research programs. Last year, 2,000 individuals participated in the Greater San Diego Chapter Walk and raised over $300,000, making it their most successful year yet.

In the few months since Gene’s diagnosis we have received valuable help and support from the San Diego ALS Association. Now, we would like to invite all of you to join us for this year’s Walk to Defeat ALS! We are forming our own walk team; Gene will be our team captain and will participate in his power wheelchair, and we want you to be part of our team. Save the date:

Sunday, October 19, 2008
De Anza Cove, at Mission Bay
Registration is @ 7:30 a.m.
Start time is @ 9 a.m.

Anyone can participate with us in the fight against ALS. The walk route is 3 miles and is completely handicap accessible. The walk day includes activities for all ages and is a fun time to gather together. We would love to have all of you!

We are calling our team GENE’S DREAM TEAM. You can register to be part of our team and walk with us and/or sponsor us by going to Gene’s walk page; just click this link: http://web.alsa.org/goto/genemccain. We hope you will register today and join with us in the fight against ALS!

God bless you,
Captain Gene and Michele

Jerry Lewis MDA TELETHON

Hi Everyone,

Like many of you, when we were kids we spent the last weekend of summer vacation swimming, eating barbeque chicken, watermelon, homemade ice cream and watching the Jerry Lewis MDA Telethon. Since 1966, comedian and entertainer Jerry Lewis has brought worldwide attention to a group of diseases called the “Muscular Dystrophies” with the 21 ½ hour telethon he hosts. At the present time, there are 43 recognized “muscular dystrophy” diseases. ALS is one of these diseases. We didn’t know this until a little over 2 months ago. To be honest, I have only watched brief snippets of the telethon over the years. Being somewhat cynical, I always regarded the telethon as a ploy that used cute handicapped children to gain sympathy and to tug at the heart strings of hard working people until they were willing to give of their hard earned money—it worked, and I am thankful. We, and many other families, are benefiting from this media “ploy” that has prompted many wonderful, hard working folks to give generously.

Last year’s MDA Telethon raised $63.8 million in donations. Over half of this money was allocated toward research; $18 million of it was given toward ALS research. There are about 225 university-affiliated MDA clinics in the United States and 38 MDA/ALS clinics. Every person that has a neuromuscular disease and is registered with the MDA is eligible to benefit directly from the money raised during the telethon. As a result, all muscular dystrophy patients may receive a free flu vaccine, assistance with the purchase and repair of expensive medical equipment, support groups and educational literature. MDA also has nearly 90 summer camps across the United States where children that suffer from various muscular dystrophies can experience an unforgettable week of fun just being a kid, at no cost for their parents! As we are finding out, these neuromuscular diseases are very expensive to deal with and many families could not make it without the help of the MDA.

Gene and I will be watching the MDA Telethon, beginning August 31 at 7pm. In San Diego, it will be on the KUSI television station. With hearts that have been tugged at, we will be picking up our phone to make a donation for “Jerry’s Kids”. We will also be thankful for every dollar that is earned, knowing from experience, it will be put to use to help alleviate the suffering of many.

With love,

Gene and Michele

HANDICAP ACCESSIBLE...

Every 90 minutes an American is diagnosed with ALS. Most individuals that develop ALS have been healthy and physically active all of their lives. The onset of the disease usually begins in the limbs, called limb onset ALS; 25% of cases begin in the mouth, called bulbar onset ALS. For all of its victims, ALS will eventually lead to paralysis of all the voluntary muscles of the body, but the rate of progression varies with each person.

When you’ve been healthy and physically active all your life, it usually doesn’t occur to you that you could ever become “handicapped” or “disabled”; Gene is now both. When you have been physically fit and active all your life, you never think about having to depend on others to take care of your needs. When you have been physically able all of your life, you don’t worry that hallways and doorways will be wide enough to accommodate a wheelchair, or pay attention to see if a building or a place you would like to go to is handicap accessible; we do now.

As one who is physically able, I’m ashamed to say that I never thought twice about leaving my shopping cart in the blue path, called an access isle, along side the handicap parking stall. I now know that the blue asphalt directly beside a handicap parking space is not there to make it convenient for me to leave my cart when I am finished with it, but it is there for the purpose of a ramp that extends out of a van allowing a person in a wheelchair to slide out onto the pavement. If that area is blocked, the person in the wheelchair has no room to exit from their van. Even with a big “no parking” stamped on it, I see people leaving their shopping carts in the “blue” instead of returning the cart to the store or to a designated shopping cart return. I don’t think people are trying to be inconsiderate, but rather are acting out of ignorance. I was such a person, not anymore.

Lately, we have been getting an education in the ways and challenges of the handicapped. We have met with the wheelchair specialist to learn about the very specialized, high tech features that Gene will need in a wheelchair; we have had much to learn. This is not your ordinary push wheelchair. Gene will be meeting with the physical therapist, the wheelchair specialist, and the ALS specialist to do a wheelchair assessment. This will be an intense appointment where his needs will be determined and they will measure Gene for a custom fitted power wheelchair called a Permobil. It is becoming clear that the Permobil is going to be a necessity very soon. We are almost looking forward to it! We have, also, been shopping for a “ramp van” so that we can maintain as much freedom and independence as possible. We will be thankful for the blue access isle when we start using the power wheelchair.

There are many obstacles to face when you are handicapped, fortunately many of them can be overcome. We appreciate all the technology that helps Gene and others continue living as normal as possible for as long as possible. We are, also, grateful to live in a country that has made getting out into the community possible for those that are disabled. Many have worked hard so that disabled persons can have easier access to public places. We are the beneficiaries of all those that have been advocates for the handicapped and disabled.

We have also benefited from all that Jesus has accomplished on our behalf. All of us have handicaps and disabilities; some are just more visible than others. Our greatest disability is the disease called “sin”. Sin has separated us from our heavenly Father, but Jesus has made access to God possible for anyone that desires it, regardless of who they are or what they have or haven't done. Jesus’ favorite people to hang out with are those that are willing to admit they are handicapped. In fact, Jesus was criticized for hanging out with those that were the “handicapped” of society—tax collectors, prostitutes, criminals, the sick, the blind, the paralyzed and crippled, etc. He said to His critics, “It is not the healthy who need a doctor, but the sick. I have not come to call the righteous, but sinners.” Mark 2:17

Jesus is also our advocate. An advocate is “one that speaks on behalf of another. It is implied that the represented lacks the skill, ability, or standing to speak for themselves.” "Even now my witness is in heaven; my advocate is on high. My intercessor is my friend as my eyes pour out tears to God; on behalf of a man He pleads with God, as a man pleads for his friend." Job 16: 19-20 When we lay our pride aside and acknowledge that we cannot speak for ourselves because sin has separated us from our true Father in heaven, Jesus stands up and speaks on our behalf. He tells the Father that you have been given full access to all that is His. You have now been granted complete access to all of God’s riches through faith in Jesus Christ, who has become your blue "access isle”.

We will be back very soon, in the meantime these closing words say it much better than we could...

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character, and character, hope. And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us. You see, at just the right time, when we were still powerless, Christ died for the ungodly.

Romans 5:1-6

We are "rejoicing in the hope",

Gene and Michele

LOST AND FOUND

...I have made you and I will carry you;

I will sustain you and I will rescue you. Job 46:4

The losses were subtle at first, hardly worth mentioning; a slight loss of strength and endurance, nothing major. But over a course of several months, the losses began making their unwelcome presence known. Gene has now lost the ability to go for walks, swim, ride his bike, go hiking, go to the gym, or just walk normally down the hall of our home or step outside to get the newspaper or mail. He is experiencing the loss of freedom and his independence to physically do normal life activities. Simple activities that most of us do easily and take for granted are being lost; once a muscle group has lost its strength it is gone forever. ALS is a devastating disease of losses. Gene is not the only one experiencing loss; everyone that knows and loves him is experiencing the loss of the active Gene that they have always known, enjoyed, and relied upon; you could always count on Gene. The real Gene, his wonderful personality and corny sense of humor are still intact!

For all of us, if we live long enough, life will be filled with a series of losses. Some of our losses will be small, others massive. Some of our losses might be positive experiences; other losses, devastating. Perhaps you have experienced the devastating loss of loved ones, friends, jobs, finances, health, independence, opportunities, and physical and mental abilities; the list of possibilities is endless. As we get older, the rate of our losses accelerates with a sort of piling up of many losses linked together. Usually when we have lost something dear to us it brings sadness, and grief; it is something we would like to avoid, but loss is a part of normal life.

Sometimes when we suffer loss it can feel as though God has forgotten us, or He is punishing us, or doesn’t care about us. Maybe we feel He has turned His back on us. We might feel as though God is taking pleasure in causing the pain and the loss that we are experiencing. Worse yet, we can feel as though He does not love us.

When I saw the above picture, I knew that I had to build today’s post around it. Unless you look very closely you may miss the fact that it is really a picture of 2 homeless men, one cradling the other. This is how Gene and I feel, like the sick, dirty, tired, needy beggar man being held by his friend. This has been a rough week for us. But, even during our lowest moments, when we have felt the most desperate, God has been willing to enter into our suffering with us and to wrap His arms around our weakness and our affliction and carry us. This is what Jesus did for all of us when he came to this world. He left the glories of heaven to become like one of us, though He was still God. He was willing to suffer and die for a sin ravaged world in order that we might know the hope of salvation. Jesus did not come to this world unapproachable or as a God unwilling to touch our afflictions. He came willing to suffer for us and He will sit right down in the dirt of our suffering with us and wrap His strong arms around us. He knows what it is to suffer. Jesus was a man of sorrows, and familiar with suffering. Isaiah 53:3

It is quite easy to be consumed by the pain of our losses. Gene and I are not superhuman that we have not felt pain, grief, and sadness in the midst of ALS; we have and we do, and we will, still. But God has a way in suffering. Many of us come to find Christ in a time of loss and suffering; and when we know Him, it is often in times of suffering, loss, and affliction that we find Him to be unusually present. This is our experience; this is what we have found to be true. And if I may speak to you as a dear friend, God often uses the time of suffering to reveal Himself to us even when we are not looking to find Him: “I revealed myself to those who did not ask for me; I was found by those who did not seek me.” Isaiah 65:1 We are all the beggar, homeless man in the picture and God would come and weep over each of us, put His arms around us, and carry us.

The loss that has caused Gene the greatest sadness is his inability to kneel in prayer. One of my dearest thoughts of Gene is his early morning prayer time—in our closet, on his knees, before his Lord. Mentally, he knows that kneeling is a condition of the heart and not the physical act so much, but now that it is lost, he thinks of all the years that he chose not to kneel because of pride and self-sufficiency.

Yes there has been much lost, but there is much still to be found. To you who have experienced the pain of losses and suffering, there is much about suffering that remains a mystery to us; but let us leave you with these words…

But those who suffer He delivers in their suffering; He speaks to them in their affliction. He is wooing you from the jaws of distress to a spacious place free from restriction, to the comfort of your table laden with choice food.

Job 36:15-16

We will be back soon, until then we are...

Being carried,

Gene and Michele

WHAT TIME IS YOUR APPOINTMENT?

My times are in Your hands. Psalm 31:15

Much of our time over the last 3 months has been spent scheduling appointments—doctor’s appointments, physical therapy appointments, ALS clinic appointments, and various other medical appointments. Then there is the time we have spent going to all of these appointments. We have such a full schedule, that we are always checking our calendar to make sure that we do not miss any of these very important appointments.

But, we are not the only ones with full schedules. Most of us are busier than we have ever been, spending our days living by the calendar. Everyone seems to have a Day-Timer, Palm Pilot, Blackberry or at least the old fashioned paper calendar, so they can schedule and keep track of all their important appointments.

There is another appointment we also need to keep, though it isn’t written on our calendars—our own death. Does that make you feel uncomfortable? Yeah, it does us, too! No one likes to think about death or talk about it, especially our own, yet the Bible speaks of our death as if it was an appointment that we all must keep; It is appointed to man, once to die and then the judgment. Hebrews 9:27. Death is also described as a “purpose under heaven”; To everything there is a season, a time for every purpose under heaven: a time to be born, and a time to die. Ecclesiastes 3:1-2a.

Let me ask you an honest question? If death is a purpose under heaven and an appointment we all must keep, why are we so surprised when someone we know dies? Are we shocked because they were too young or too healthy or we feel that they were robbed of the chance to really live? Of course, we feel sad for the loss, especially if it is someone we love. Maybe I am the only one that thinks this way, but isn’t there, also, a measure of curiosity? Don’t we want to know the details about what happened? Maybe this is why many of us love to read about the sufferings of Job in the Bible, or someone’s book, or blog. If I can observe from a distance someone else’s pain, suffering, or death, maybe it won’t touch me or anyone close to me; but for us and for most other people, it did, and it will.

Isn’t it weird to think about your own death? Sometimes, I’m not sure we believe it is really going to happen to us. Death may be an ‘appointment’ and a ‘purpose under heaven’, but most of us spend very little time thinking about it seriously or preparing ourselves for it.

A lot of people say that they would like to die quickly or hope that they will die peacefully in their sleep. I’m not sure what I think is worse, knowing in advance I am going to die or dying suddenly; without warning. There are advantages and disadvantages to both. The advantage to not knowing is obvious; there is no fear of anticipation; no dread of impending loss. The disadvantages are many—we might be leaving unfinished business that our loved one’s must take care of, wills that were never prepared, words never spoken, feelings never shared, broken relationships not repaired, goals and dreams never accomplished.

Back when we lost our son tragically and unexpectedly 10 years ago, I thought that it was much harder to lose someone you love suddenly. We were left with so many regrets; not being able to say good-bye; no chance for one last “I love you”. Though losing someone you love is always hard, whether it is expected or unexpected, I may be changing my opinion about which is harder!

Expecting death is a very different situation. Gene says that the good thing about knowing he will die is that he can get ready for it, both practically and spiritually. When he was younger, there were a number of things Gene wanted to be able to do in his life. He always wanted to own a Model A car and to be able to water ski still at 60 years old, to have another dog so he could take it on long walks; goals he will never achieve. But his sights are set much higher now—“no eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love Him.” 1 Corinthians 2:9. He really doesn’t feel a great need to go and do a bunch of exciting things to feel complete, really he cares more about me and our family and showing others how to be ready for their “appointment”, than he does about fulfilling personal dreams.

When I think about losing Gene, it is near impossible for me to imagine that he could be leaving us. When we talk about his dying, it seems so unreal to me; like a bad dream. How can the love of my life and the father of my children leave? But, Gene has been teaching me much about how to face death and to really live life. We have learned along the way that the goal of this life isn’t striving to achieve a bunch of earthly dreams. The quality and success of life is not measured by how much we have achieved, or how much money we have made, or how many exciting things we have done. A life well lived will be measured by being able to say, “For to me, to live is Christ, and to die is gain.” Philippians 1:21

Expected or unexpected to us, we all have an appointment with death to keep. In fact, some of us may die before Gene does. Our death may not be on our calendar, but it is on God’s. When our son died, we had many people say to us that he died before his time. Even in this current experience, people have commented that Gene is too young for this to be happening. A scripture that reassured us that our son did not die one moment before “his time” says, All the days ordained for me were written in Your book before one of them came to be. Psalm 139:16b.
God has a book with each of our names written in it. Beside our name is the day and time of our earthly death. No one will die earlier or later than God expected, He is never surprised or taken off guard by death. Whether we are ready or not, expecting or unsuspecting, we will all arrive on time for the appointment.

Looking forward to sharing with you again. Until the next time...

Gene and Michele