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

WHEELCHAIRS, BEDPANS, AND WHOOPEE CUSHIONS!

Gene on His "Whoopee Cushion" July 30, 2008

Hi Everyone,

We thought we would use today’s post to just give you a brief update on how Gene is doing and what we have been up to. Where were you yesterday during the earthquake? We were sitting in San Diego at a place called the “Ability Center". The Ability Center is a huge warehouse filled with products for physically challenged people. This is not just your average medical supply kind of place. They have all sorts of products that help increase mobility, like “accessibility vans”, wheelchairs of every type, reclining lounge chairs that also stand up, home elevators, vertical platform lifts, ramps for the home, etc.; a whole new world to us. This place was much larger than we expected and very busy with many people coming and going with all kinds of disability needs. We are just learning about the world of disabilities and the many, many people that deal with all of this on a daily basis.

One important thing we are learning about ALS is to be prepared for our future needs before we need them. So we were shopping for what is called a “ramp van”. A ramp van has an automatic wheelchair ramp and special locks for a wheelchair to be secured into the place where the passenger seat usually is. We went for a test drive with our “mobility specialist” and it was a very impressive vehicle. When Gene does need a wheelchair, he will need a very hi-tech one. The van and special wheelchair will allow for us to still be part of the community and to go on small trips.

We also went back for the second time to the ALS Association because they are wonderful! They have a huge loaning closet filled with all kinds of “toys”! They had already loaned us a walker, a portable wheelchair, and a cane. But they had some more stuff for us. One of the things Gene misses most is being able to ride his bicycle. Yet, at the ALS Assoc., they had a stationary floor pedal gadget. He can use it in a chair and set the thing on the floor and get a little cardio workout and not have to worry about falling in the middle of the street.

The loan closet is filled with all kinds of “durable medical equipment” that someone with ALS might need. We don’t know where they came up with the term “durable medical equipment” (DME), but in case you have never heard this term before it means “medical equipment that is primarily and customarily used to serve a medical purpose, can withstand repeated use, and is appropriate for use in the home.” We laughed the first time we went into the closet, not knowing what to expect, all we saw were bedpans and bedside commodes and boxes of “Depends”. Gene says it’s okay if you want to laugh at his expense, he’s laughing, and anyway someday we will all need a lot of our own “durable medical equipment”; he’s just a little further ahead than most of us.

One cool piece of equipment they have loaned us is what we are calling the “whoopee cushion”; actually, it is a seat lift, but it looks like a whoopee cushion. It lowers Gene into a chair so that he does not have to use his leg muscles so much. Then when he wants up, he just leans forward, and it pushes him into a standing position! You have to be careful that the tension isn’t set too tight or it will launch you across the room; actually Gene likes it on the turbo launch setting!

We are planning to get Gene one of those comfortable recliner chairs that also help him stand when he needs to get up; I really want him to have one of these, I think it would be so comfortable for him! We are also thinking about our bed situation. Our flat, pillow top is too flat for Gene. He needs one that he is able to adjust up and down, though he doesn’t want a hospital bed unless it is big enough for the 2 of us to be in together; me too!

We are waiting for the insurance to authorize a foot-ankle orthosis, otherwise known as an FAO. This is supposed to give his right foot drop support and to help him walk a little easier; Gene is skeptical that it will. We are also waiting to be scheduled for a sleep study. Typically, as ALS progresses lack of oxygen is a concern, especially at night. They don’t believe this has happened to Gene yet, but we need to get a baseline. In the future, he will need to use what is called a bi-pap machine (a special breathing machine). These are commonly used by people that suffer from sleep apnea.

We will be going up to Irvine’s ALS clinic on August 5th and then to the San Diego MDA/ALS clinic September 3rd. We are a little disappointed that we can’t be seen in San Diego sooner, but we are not the only people dealing with “stuff”.

In the midst of all of this, we still have fun; how can you not with Gene around? Gene was able to go to lunch with a group of old friends. Of course his friends took a page from Gene’s book and showed up wearing Groucho Marx glasses and mustaches; he loved it! We have been to the movies with his mobility scooter; out for romantic dinners; and having dinner with friends. Gene went to the grocery store with me for the first time yesterday since last spring. We have also been able to attend church; that has been the best!

Well, now you are brought up to speed on what has been happening. It has been wonderful getting your emails and especially wonderful to be seeing many of you. This is a disease that one person cannot and should not handle alone and we are not, thanks to all of you. How we praise God for each and every one of our family and friends that have shown such love. We have also made many new friends; many that have suffered far more than we have. We love you.

As we end today's post, may we encourage you with these words...

Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.

1 Peter 4:12,13

Until the next time, we are...

Sorrowful yet always rejoicing,

Gene and Michele

SONGS IN THE NIGHT...

By day the LORD directs his love, at night his song is with me--a prayer to the God of my life. Psalm 43:8

At first, they were an intrusion to the already long, sleepless nights. Have we always had so many birds outside our bedroom window? Have they always sung this loud, at all hours of the night? Why haven’t we noticed them before? Could it be we only notice them now, because we can’t sleep? Who knows?

Nights are long when you can’t unplug your brain and your thoughts race wild; exaggerated thoughts of terrible things that could or will happen, thoughts of uncertainty, thoughts of fear and dread for what lies ahead. Your soul is in great turmoil.

The 2 months between suspicion of ALS and the actual diagnosis were some of the most agonizing days and nights of our lives so far, yet in some ways, some of the sweetest. On the afternoon of May 1st, just 3 days before Gene’s 59th birthday, we drove home from our first neurology appointment; I headed to the couch doubled-over with fear and grief. Gene said to me “I don’t think it is as bad as you think!” That night, we both lay in the dark and listened and hoped God would speak to us; all we heard were birds. The birds sang an insistent song. Their songs were unusual; songs we had never heard before. Morning brings no relief, only more fear and dread. Gene says, “We need to make some plans”; even for the optimist, the reality was sinking in.
Days passed by. Don’t answer the phone, don’t go anywhere then we don’t have to explain any of this to anyone. If we don’t tell anyone what is happening, maybe it isn’t real. Waiting is hard, knowing could be harder. Having to talk about it; torture.

The usual peaceful sleep is replaced by a cycle of fitful sleep and waking, bad dreams, thoughts that won’t quit, and more birds.
“Do you hear that one?”
“I’ve never heard it before.”
“What kind of bird do you think it is?”
“I don’t know, but it’s beautiful.” Back to sleep.
“Do you hear that?”
“What is it?”
“A car alarm, I think.”
“No listen, it sounds like a man’s taunting voice.”
“No, it’s not.”
“What is it then?”
“I think it’s a mocking bird.”

Days are filled with the ordinary tasks of home life. Feelings alternate between moments of sheer fear and rock solid faith. As moments of fear and panic try to push to the surface, we must fight to fill our minds with what is true… If God is for us, who can be against us? Romans 8:31; For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. Romans 8:39

We want to be real with you in this post. In this short space that we have to share our heart with you, we lack the words and the wisdom to explain the depth and the mystery of God’s ways. We would be lying to you if we said that this has been an easy time for us, but we can tell you that we do not spend our energy asking God the “why” question. We can also tell you that we believe to the depths of our core that God is good, and what He does is good. Having walked through pain and suffering before, we have learned a few valuable things. We have learned that when the taunting voice of the “mocking bird” accuses and suggests, we need to preach to our soul what is true. We believe this is the primary way we have coped. This is not the same thing as positive thinking or stiff upper lip or keeping a good attitude. Faith is not a feeling you muster up. Faith is a fight and faith is increased by feeding on the truth of God’s word.

Even at night, no especially at night, the birds sing a beautiful song. Hear their song and receive it as a gift, not an intrusion. It is designed by God, for the purpose of ministering His grace and mercy to you, drawing you closer to Him in order that you might treasure Him and desire Him above all earthly treasures.

Bad things, hard things happen to all of us. God will allow the night to come to our lives, but there is a song in the night; if only we will listen. And when the morning arrives, His compassions will be waiting for you.

I remember my affliction and my wandering, the bitterness and the gall. I well remember them , and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The LORD is my portion; therefore I will wait for Him."

The LORD is good to those whose hope is in him, to the one who seeks Him; it is good to wait quietly for the salvation of the LORD.

Lamentations 3:19-26

Until next time we are...

Singing in the night,
Gene and Michele

THE RACE SET BEFORE ME...

Gene and Michele after the St. Patrick's Day Dash Fun Run March 16, 2008

It probably really started late last summer or early fall. The physical weakening was slight at first, probably just a wrenched muscle or pinched nerve in the back. Rest would take care of it. Unfortunately, it didn’t.

So many people have asked “how did we know” and “how did it start” that we thought we should use this post to explain the onset and progression of Gene’s symptoms, which led to the diagnosis of ALS. In our next post we will tell you about the nearly 2 months between suspicion and diagnosis, which was in many ways a very special time for us.

Like we were, you are probably very unfamiliar with the disease of ALS. Many people have heard of Lou Gehrig’s disease, but the real name for the disease is Amyotrophic Lateral Sclerosis or ALS for short. Though, we do not want to only focus on the disease in our blog, we do want to educate people and bring much needed awareness to this very devastating disease.

ALS is a fatal progressive neuromuscular disease, characterized by weight loss, increasing muscle weakness, muscle cramps and fasciculations (generalized muscle twitching). The onset of ALS is subtle with muscle weakness or stiffness as early symptoms. There is an inevitable progression of wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and respiration. Mental faculties are not affected. The cause of ALS is unknown in 90% of cases, though environmental triggers are suspected. Only 10% of cases are thought to be hereditary. Also, ALS is not contagious.

Roughly, 5,600 people in the US are diagnosed every year. There are on average 30,000 Americans at any given time with ALS. Men in the age bracket of 50-60 are the most likely to contract the disease, though anyone at any time can contract it. Progression is at varying rates and usually begins with the tongue, arms, or legs. Gene’s began in the legs and abdominal muscles.

Late last summer, Gene was doing some projects in the yard, laying block and pruning huge trees that line our property. The only problem was everything seemed to take more effort. Then in October, we were in Washington visiting our son and daughter in law. Gene went jogging with our daughter-in-law, who was training for a ½ marathon. Gene was going to attempt 3 miles, which should have been fairly easy since he was in great cardio shape. But, after only a mile he came back into the house saying he felt like he was running in concrete. During that same trip he had an excruciating muscle cramp in his lower calf muscle. In January our daughter-in-law came down to run the Carlsbad ½ Marathon. Inspired by all the excitement, Gene and I decided we would enter our first 5K run that was to be held at the end of the month. On the day of the race, I sped out ahead of Gene. When we crossed the ½ way point, we had to pass by each other. I was concerned, because Gene looked fatigued and hunched over. Still thinking his back was the root of the problem, Gene signed up for a number of sessions with his favorite chiropractor. Exercises and strengthening muscles would fix it. It didn’t.

In March we traveled up to Washington to visit our son and daughter-in-law again, who were signed up for a St. Patrick’s Day fun run. Not to be out done by our kids, we signed up too. On the day of the race, our kids ran ahead with their friends. When it became obvious that Gene would only be able to walk this one, I decided we would walk it together. This was when I had my first inkling that something more than just a bad back could be wrong. Gene was having such trouble just walking normal. His gait was unusual, almost looked like a Parkinson’s disease shuffle, but different. A couple days later he was doing better and we continued on with the rest of our trip.

Later in March, Gene was scheduled to go to our primary care doctor for something else and I told him to ask for a referral to a neurologist, just to rule anything serious out. I told Gene to insist on the referral, which he had to do, because our doctor didn’t think his symptoms were worthy of being sent to a neurologist. We got the referral, but the first appointment wasn’t until May 1. Unbeknownst to me, Gene had been having quite a few painful muscle cramps.

Then the last Sunday in April, right before his May 1st appointment, we were eating lunch at home and I noticed that the undersides of his upper arms were twitching (known as fasiculations—painless muscle twitching) unbelievably fast. Being a former R.N., I went on the internet and did a search of all his symptoms. Seeing the words ALS and reading that it was a fatal neuromuscular disease, was like the darkest and scariest feeling I could ever feel. This could not really be true! I decided I would share with Gene that it was possible he had ALS and what it would mean, because what I read said that doctors will not even mention the words “ALS” before all other diseases or conditions are ruled out. Gene is not medically savvy and I did not want him to experience the shock of hearing for the first time that he would lose the ability to use his voluntary muscles and end up dying, when he was thinking it was simply pinched nerves in his back and maybe the worst thing that would happen was that he might need surgery to correct it.

I learned that the diagnosis time for ALS takes an average of a few months, because there is no specific medical test for it. ALS is only diagnosed by symptoms and ruling out all other diseases that could possibly have similar symptoms. As an aside, I personally, think it is cruel that if ALS is a likely or possible diagnosis that the doctor doesn’t lay the ground work by preparing the patient for what might be. I have read that this is very typical.

When the neurologist came into the room to examine Gene, he observed other parts of his body that were twitching and cramping, and checked for strength and coordination. When he ordered the tests that I had read were always ordered for the purpose of ruling everything else out, panic filled my heart. I knew the neurologist was thinking what I was thinking. The “tests” were ordered: blood work to rule out Lyme disease, heavy metal poisoning, checking if muscle tissue proteins were in his blood (a symptom of ALS as the muscle tissues atrophy as the nerves in the brain and spine die off); a series of muscle and nerve tests; and brain and spinal cord MRI’s.

The tests were finally completed and we had an appointment scheduled for June 23rd to go over all the tests. By this point, Gene’s physical condition continued to worsen. We asked the doctor to put in an authorization for a walker.

Gene is now using a mobility scooter, in addition to the walker, so he can conserve his energy. His right side is weaker that the left and he has what is called foot drop of the right foot. His upper body strength has worsened and he is unable to lift or carry heavy objects. His speech is still normal. He is unable to sneeze or cough normally, due to the weakened abdominal muscles.

The hardest part during those two months, was not being able to tell those that were closest to us that we suspected ALS. It was a very dark and lonely time. We spent our time during the weeks before the final diagnosis preparing ourselves practically, emotionally, and spiritually. We would like to tell you about these weeks in our next post.

We would like to end today’s post by thanking all of you who are reading our blog. Blogging is not something we would normally do, however, we feel compelled to share our story. The feedback has been overwhelming and way beyond anything we could have anticipated. We want to give you permission to pass our site on to anyone that you feel may benefit from reading it. We have been trying to keep up with the emails we have received and if we have not responded to you, please forgive us for our tardiness. We could not walk this road alone and we are so grateful to God for each and every one of you. If you are new to our blog and would like to contact us personally, Michele’s email is www.mccain2@hotmail.com and Gene’s is www.genemccain@roadrunner.com ; we would love to hear from you.

So until next time, let us leave you with these words…

"However, I consider my life worth nothing to me, if only I may finish the race and complete the task the Lord Jesus has given me--the task of testifying to the gospel of God's grace." Acts 20:24

Race on,

Gene and Michele

NEVER GIVE UP!

"Never Give Up"; these are the words inscribed upon the plastic wristband Dr. Robert Miller, of the Forbes-Norris MDA/ALS Research Clinic, gave to Gene when we were wrapping up our visit to San Francisco. What an uplifting trip it was. We were greatly encouraged by the kindness and attentiveness of the whole staff. Dr. Miller spent nearly 3 hours with us, examining Gene and questioning him in great detail. Dr. Miller informed us that he has cared for thousands of ALS patients, yet when he asked Gene how his spirit was, Gene, with tears, explained his Christian faith in Christ; Dr. Miller had tears in his eyes. He later informed us that he shared our faith, would always remember us and would be praying for us. It was a very touching moment. Dr. Miller believes that Gene is fairly early in the disease process and is considered fairly high functioning at this point, and with normal lung capacity. This was encouraging news. The trick with ALS is staying ahead of the game by anticipating the next need before it becomes a crisis. ALS clinics address the disease from a multidisciplinary approach, as every voluntary muscle of the body will eventually be affected. This means that the ALS team will include a physical therapist, occupational therapist, respiratory therapist, nutritionist, psychological help, social work, etc., etc., etc. Finding the right clinic is very important. All of this can feel very overwhelming and easy for us to only focus on ALS. But, the staff at the Forbes-Norris clinic were full of compassion for how their patients must feel. How many times have you been to the doctor where he/she cries with you and the nurse walks you out to the curb, hugs and kisses you goodbye? They truly treated us as they would want to be treated. We will be going up to UC Irvine's ALS clinic for a comparison.

Oh, by the way, we should mention the mood lighting on the flight, as we are sure you all must be dying to know; we liked it very much and we can't imagine flying without it. It was very 1960's! Ummm, just kidding. It was actually kinda weird! We did learn some of the ins and outs of traveling as a disabled person. We have such admiration for those that are disabled.

We promised you in our first post that we would not just focus on ALS, even though we would keep you all informed about Gene's health. We want to be true to that promise. There are at least 2 things that inspired us during this trip. First, was the slogan on the wristband, "Never Give Up". What does this phrase mean to you? We will try to explain what it means to us. To us, "never give up" does not mean that God owes us a miracle healing. He may do that, and He may not. Every day we are praying for a complete healing, but there is so much more to anticipate than just physical health. We think there is a greater miracle worth seeking. Luke 18:1 says that "we should always pray and not give up." Don't give up what? We think Jesus meant the pursuit of Him. The final words of Jesus' parable say, "when the Son of Man comes, will he find faith on the earth?" When God does not answer our prayers the way we think He should, rather than trusting Him and His goodness and wisdom, we often become angry at Him, embittered, and turn our backs on Him. But, knowing Christ is far more valuable than our health, our wealth, or anything else we could ever achieve. If we will permit it to be so, it is in our suffering that we can come to know Him more deeply.

"But whatever was to my profit I now consider loss for the sake of Christ. What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them rubbish, that I may gain Christ and be found in him, not having a righteousness of my own that comes from the law, but that which is through faith in Christ--the righteousness that comes from God and is by faith. I want to know Christ and the power of his resurrection and the fellowship of sharing in his sufferings, becoming like him in his death, and so, somehow, to attain to the resurrection from the dead. Philippians 3:7-10.

Knowing Him is the reason we will "never give up".

The second thing that inspired us, was something Dr. Miller said to us, "there is no cure, but there is hope". This is not the first time we have heard these words as it relates to ALS. But, we want to ask, if there is no cure, what are we hoping for? What are you hoping for? This is a very important question to ask yourself, for everything in life depends upon it. Where does your hope come from? Is it a feeling that you make yourself feel? We don't know how you would respond, but can we share with you how we respond to that? The word "hope" is derived from the root word meaning "to anticipate, usually with pleasure; to wait for with full joy." The disease ALS (or any other disease, for that matter) is anything but a pleasure and the anticipation of what lies ahead can be frightening. If our hope is in finding a cure, it is likely we will be disappointed. If we focus on our ALS, we can feel very hopeless. But, we have made a choice. We have chosen to put our hope in the Living God, who is the Savior of all men (1Timothy 4:10). He is the ground upon which our hope rests. This is the opposite of despair.

Yes, everyone, there may be no cure, but there is much to hope for!

Well, forgive us for being so long winded. Let us leave today's post with a blessing to you, as you have all been such a blessing to us.....May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

Until next time...

With love and thankfulness,
Gene and Michele

TAKING THE NEXT STEP...

Hi Everyone,

We want to begin this post by saying how much we appreciate the positive response we have received to our blog! We so appreciate the many emails we have received and the comments that you have posted. We are also delighted to have heard from other ALS patients that have seen Gene's profile on ALS websites; we welcome you here and hope you will return to check up on us.

Okay, down to business! We are off to San Francisco tomorrow! Our doctor here has arranged for us to see one of the leading ALS research doctors in the US at the Forbes-Norris MDA/ALS Research Center. They are conducting some new clinical trials that Gene may qualify for and they are also on the forefront of ALS treatment looking for new ways to prolong life in ALS patients.

This will be the first time that we are traveling as a disabled person and we need to take advantage of those nice people at the airport that wheel you through to your gate and then wait there when you get off the plane. Of course, this is very humbling for Gene who has always been so capable and I'm usually the one running to try to keep up with him! But they say God has a sense of humor and we have been doing a lot of laughing because when we made our flight reservations we had to go with Virgin America (we have never flown with them before, in fact I wasn't sure they were even a legitimate airline!). Check out the picture; they advertise that they have mood lighting during the flight. We half expect the pilot to come out and say we are on "Cash Flight" (Cash Cab). Gene is doing a really good job at keeping his weird sense of humor and he keeps me laughing, but I keep telling him that his sense of humor is inappropriate for someone in his condition because people don't get it! I guess that is one reason we have had such a great marriage is because I get it. In fact, we are sitting here cracking up as I write this!

But all kidding aside, here is one of our "don't waste your ALS" plans. Gene had the idea to make up some business cards with his name and our blog address on it. As you know, Gene is a very friendly guy. We have noticed that people tend to stare at you when your giddy-up isn't working too good, or you are pushing a walker or riding a mobility scooter, so Gene uses the opportunity to strike up a conversation and then he wants to hand them one of his cards. They say "Gene McCain--I have ALS, but God has me!" and then it has our blog site on it. It also has Romans 8:18 on it I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.

People are receptive to him. He is taking a huge stack of his cards to San Francisco with us. The clinic has the largest ALS population of any other clinic. We have not yet met a fellow ALS patient in person and we are looking forward to it. In fact, God is really touching our hearts with an awareness of all the disabled people that we are seeing in the community lately. I am amazed at how many attend our church!

We will report back to you when we return from the "trip".

Gene has finally fallen asleep and as I glance over at him I think how hard it is for him as he continues to lose his strength and independence. As I see him reflect Jesus, I have never been prouder of him or loved him more. When I look at him I think of the verse that I will close this post with: 2 Corinthians 12:8-10 Three times I pleaded with the Lord to take it away from me. But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power my rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. for when I am weak, then I am strong. Gene is one of the strongest weak people I know.

We are so blessed to have you all in our life,

Gene and Michele