Posts Tagged ‘ALS’

Your Secret Super Power a Few Years Down the Road

I wrote a piece several years ago for a wonderful website called “Inspire Me Today”.  I wrote it while my now deceased husband was still alive and we were fighting for his life.  It is being reposted today and I hope you will revisit it by clicking here

As I reread the piece it made me reflect on how much as happened since I wrote it and how my view of the world has sharpened over time.  Even though Jim did not survive, our collective belief in ourselves, our family, our strength, and our knowledge that Jim would be healed in some way has not changed.  Our resilience got both Jim and I through some incredibly hard times.  Jim had chronic neurological Lyme disease that expressed itself with overlapping ALS-symptoms.  It got to the point that Jim could no longer walk, move, talk or breathe on his own.  Yet through these years Jim managed to touch people, to smile when friends showed up, to be present for our children.  His will was incredible and he survived longer than many physicians thought he would because of his belief in himself.  I juggled a job and raising children, managed to keep our family functioning as a family, and spearheaded Jim’s care because of my belief in self, lifted up with God’s help, and supported by many loving family and friends.

During the end of Jim’s life a friend said something profound to me that helped me realize that regardless of whether Jim would be healed while on Earth, it was guaranteed he would be healed after death.  In heaven, Jim is healthy again.  Our belief in self and our belief and faith in God supports that inner resilience and can make reality happen here or after in heaven.  My super power is still found within – it has taken a beating, but the joy I can feel for life and my children has been highlighted more brightly because of the pain of what we went through.  Not in spite of, but because of….. the secret super power is still present in full force – helping me carve a new path of my own choosing.





The Intensive Care Unit, The Peace, The Death of One Man and The Sparing of Another, and The Crocus

Signs of life in the Denver Desert

Signs of life in the Denver Desert (Photo credit: mandymooo)

Another hospital stay.  My sweet husband, lungs partially collapsed.  Again.  My sweet husband, unable to move his body on his own, talk, or breathe without technology.  Five days into the stay, things were not going well.  I had thought Jim would have been home by now, but his lung would not cooperate.  On this fifth day, something was different.  Jim looked deflated, sad, pale, and checked out.  His eyes were wide-eyed, crazed in a way, but in general, he was so out of it.  I began to worry, once again starting to think about our children and whether I was handling things alright.  Six years into this health hell, you would think I would have many things figured out, but of course, I do not.  Curveballs are constantly thrown our way.  Confusion about “why” is commonplace.  Dark thoughts creep in often enough.

On this fifth day, I had a phone message waiting on my cell phone.  When I had the opportunity, I listened.  It was a nice message, one from a minister at church who said he was thinking about Jim and me during this period of waiting.  Our years-in-waiting period.  As I listened more, it became evident that he did not know Jim was in the hospital.  I called him back and although it was late in the day, he picked up the phone.  I explained what was happening while holding back tears.  Still, I am sure he could hear it in my voice and asked if he could visit that night.

When he arrived, the room instantly calmed.  His broad smile stimulated a smile on Jim’s face.  His kind words soaked over us both and I felt a peace come over the room.  He spoke of the advent service at the church just hours prior and the reminder that Jesus is the light that came in the darkness.  He reminded us that God is present even in the desert, that rebirth is a promise, and that hope and faith will get you far.

As the minister was speaking, I could hear another patient’s monitor going off.  I looked up at the screen which he shared with Jim and I could see the patient’s heart rate, oxygen levels, and other vital statistics.  I knew this other patient was in trouble.  He had been struggling for several hours.  Then, the  beeping would stop.  The minister continued.  A few minutes later, I could faintly hear the “code blue” in the background.  I was not sure if the minister or Jim were aware.  We continued praying, talking, and peace was in the room with us.  Again, the patient’s vitals came and went and then again several minutes later the “code blue” alarm.  This continued back and forth as our visit went on.  I said nothing out loud, but prayed silently for the patient.  I didn’t want to cause anxiety in Jim, but wondered if he knew what was happening.  The monitors changed again, but this time, the flatline did not bounce back to the normal up and down of an EKG.  It stayed flat.  The numbers went to zero and my heart sank.

A few things struck me.  First, there was a peace in Jim’s room regardless of the stirring going on around us.  Second, I was struck that in one room a patient died and in my room, my husband was spared.  Third, I was reminded that this was the second time this event happened – a death in the ICU directly in the room next to my husband’s room (on the hospital visit prior to this one).  Fourth, I am left to ponder the “why” of it all.

I do not pretend that I will ever understand this, but I do know there is not a coincidence in these events.  Instead, I take these signs as a message from God that He is present, He is all-powerful, and that His will is it.  There must be a plan and ultimately good to come from Jim’s story, presence, and life.  He suffers so, but his perseverance is inspiring.  Jim teaches me much, reminds me of so many blessings we have, and helps us focus on that which is important in life.

The minister read to us a passage from Isaiah 35: 1-2 (NIV), that is telling:

The desert and the parched land will be glad;
the wilderness will rejoice and blossom.
Like the crocus, it will burst into bloom;
it will rejoice greatly and shout for joy.
The glory of Lebanon will be given to it,
the splendor of Carmel and Sharon;
they will see the glory of the Lord,
the splendor of our God.

The Bee Sting Philosophy of Life

It happened the other afternoon. The injustice. The betrayal. The perspective change.

My kids and I were having lunch outside on the patio of a restaurant. It was a lovely October North Carolina afternoon. The sun was shining and bees were flying about as we ate our sandwiches. This scene was perfect – blue skies, warm temperatures, and insect life surrounding us. The bees didn’t bother us; I had taught my kids to be calm around them. I ensured them that the insects were not interested in us and only would sting if we acted crazy causing the animals to move into defense mode. So, there we were eating, laughing, enjoying the sun when suddenly I hear my 4-year-old daughter scream like I have not heard her scream before.
Bolting into action I spun around looking for the culprit. My daughter grabbed her arm and insisted a bee stung her. I couldn’t believe it! How was that possible? We followed the rules. The bees crossed the line. Our first reminder that life is not fair.

A European honey bee (Apis mellifera) extracts...

A European honey bee (Apis mellifera) extracts nectar from an Aster flower using its proboscis. (Photo credit: Wikipedia)

I quickly picked up my daughter and hugged, kissed, and rocked her as she screamed bloody-murder into my ears. But then, the pain subsided a bit and the screaming changed into sobs. After a few more moments, the crying was interrupted by some pauses and then we moved into recovery mode. Going into the restaurant, I asked for some ice and told the man what had happened. He looked at me strangely and then said “She is handling the sting very well.” She was. I was proud of her. Then he added, “What did you do or say to her that she is so calm?”

“I whispered to her that it was not fair that the bee stung her, but that it happened and she needed to decide how she was going to respond to it. It was all up to her.”

My daughter has heard me preach this message before. The act itself, and the pain that followed, was not deserved. She did nothing “wrong” and still she was attacked. But, she could have cried and cried and let her whole day be ruined or she could decide to move on and let her body heal itself and focus on that which was still good.

My children hear these words from me often. They have also see this message play out in action in our home. Their daddy is so sick, with Lyme disease and ALS-mimic symptoms. He can’t talk with them, play with them, or interact with them as we would all like. He did nothing wrong and certainly does not deserve the pain and sadness that occupancies a horrible disease. But, he can choose, and by default his family can choose, to look at the good things in life over the bad condition. The event may not be changeable, but how we move on from the event is all ours.

The Bee Sting Philosophy.


Michael Jackson Bringing Back My First Life of Healthy Years

I was rollerskating the other day with my two children, ages 6 and 4. It was a special day for us – no school, no work – just trying to have a fun day together. Unfortunately the fourth member of our family, my husband Jim and my kids’ dad, was not able to join us. Physically he cannot stand, let alone skate, and the idea of wheeling around the wheelchair with the ventilator attached didn’t strike me as very safe. Still, like with most things in my second life, the “sick years” as we call it, I try to focus on the goods that are there and directed my attention to my kids and the fact that they were having such a good time. They were racing on the rink, laughing with pure joy, and dancing and singing when they knew the song. But then it happened. Michael Jackson’s “Don’t Stop Till You Get Enough” came booming out of the speakers. I started to sing and my kids looked at me with strange glances. “This is Michael Jackson you guys,” I said. “He is one of the best musicians that ever lived.” My daughter was impressed and started to shake a little more. I smiled, but then my heart sank. Her movement reminded me of Jim. My husband could cut a rug in his days and this particular song I remember with such affection. At our wedding reception he and his buddies were on the dance floor doing all kinds of moves. I remember laughing at their silliness and thinking my future has started with this man of good dance moves. In that moment, on the roller skating rink, I missed my first life, the “healthy years.” I missed my husband and I ached for my kids to know their daddy as a healthy man, one who could play with them, teach them to dance, and tell them about famous singers.

I found it hard to skate from then on. I fought back the tears, shook myself about trying to get rid of the bad feelings. But then something else happened. I remembered that the bad feelings were bad because they had been so good at one point. The bad was sandwiched in a great memory, a happy time, and one at that wedding reception, that was so full of promise and hope and a future. As I skated round and round that rink with my kids I realized the promise and the hope and the future are still there as well. I choose to believe and know that dancing can still be a part of Jim’s future.

Click here to listen to the song and to see Michael Jackson dance!


The Paused Word, The Longer Hug, and The Unspoken Nods

There is often such expression and information when things are not verbally said. It is hard sometimes to make sense of it all, and often there may be a missed opportunity to say something of significance, but the unsaid and the gestures can go a long ways to forge an understanding between two people.

walking on beach

My major experience with this has been found with interacting with my husband. With chronic Lyme disease that has hit his neurological and muscular systems in a fashion similar to ALS, it is currently difficult for him to speak. Even pointing to letters on a board in order to spell out a word can be problematic at times for Jim and so I have learned to guess, predict, and try to talk about things in a way that is more “story-like” in nature rather than discussion based.

The other day I had an experience which I have certainly had before, but it was somehow more powerful this time around, different in some way. One of Jim’s cousins and a dear friend came for a short visit. It meant a lot to us because he and his wife live overseas now and when they do come to the States, they have lots of people to see. When the cousin left, we gave a glance to each other that brought tears to my eyes. The nod that followed from the cousin told me “I know. This sucks. Hang in there.” The bang of that moment was intense. Jolting myself out of it, I hugged his wife, and when I turned to the cousin, I started to say something and stopped. I don’t even remember what it was. I paused and he picked up, sensing it was necessary. Then he paused and we had the nod exchange again. I was about to bounce away, drawing support from my two young children who were playing in the yard, when the cousin leaned in to give me a hug. I thanked him for visiting and hugged him back, ready to say, “Be safe guys. I hope you have a good rest of your visit.” But I found myself unable to pull back. The cousin squeezed me again, a little harder and just for a few seconds longer, and by doing so gave me such a strong sense of relief that someone got it, things were alright. Not good, but alright. The hug was a reminder to hold on, stay strong, and keep up the fight. People were around my family showing support and love and would be there to give a hug or a nod when the time was again necessary.



Mothers and Others Make the World Go Round

Mother & Child

Mother & Child (Photo credit: Andy Magee)

I was struck upon reading the numerous stories in Miracles & Moments of Grace: Inspiring Stories from Moms that the common thread appears to be two-fold: genuine gratitude and a true desire to care for someone other than ourselves. My story is one of the chapters in the book where I retell how the conception and birth of our second child was a sign to my very ill husband Jim and I that things were going to be alright. I knew the timing of her conception and the message she was giving to us was to continue the fight, the hope, and to believe that things could improve and would improve in due time. Now 4 years later, we continue our battle and continue to believe better days are ahead, but wonder how much longer it will take? Jim has chronic Lyme disease with ALS symptoms that have hit his neurological and muscular systems hard. His progress seems painful slow and doubt over his prognosis can plague me on a regular basis. Whenever I start to go down this dark path of fear, I am reminded to stop and believe when I look at my daughter. She is all spunk, with a willingness to take on the world, and I am reminded that this is exactly the right attitude to have. Then I am reminded what a privilege it is to be her mother. How grateful I am to have both my children in my life and how fantastic it is to be able to help care for and love another human being.

And, of course, you do not need to be a mother to take on this caregiver and nurturer role. There are so many people in our lives that help us care for, love, and mentor our children. I hope they receive the blessing back from the kids that they are conferring to them – the blessing of connection and care. The blessing of helping and influencing.

So whether mother or not, what a wonderful and very cool thing it is to be able to feel so connected to someone that you look forward to both the happy and sad times, the fun and the dull, the exciting and the scary. For each of these moments and events in life provide an opportunity to experience fully what it means to live a life worth living.

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The Lyme disease Game Changer

Two men.  Same very bad health situation.  Both very smart.  Both motivated to beat the illness.  What struck me during the most recent “pow-wow” of the minds was how different these two men were in their approaches to their disease – Lyme disease – that has hit their neurological and muscular systems hard to the point that ALS/Lou Gehrig’s disease is mimicked.

I was present for the meeting since I was acting as interpreter for my husband, who is now using a letter board to spell out his words.  His muscles are so weak and his diaphragm hit to the point that he had to have a tracheostomy a few years ago.  I know my husband well, know what he has researched, know what his thoughts are on many issues, and could fill in his words before he completed them fully on the letter board.  My husband looked at many angles of Lyme disease.  He considered the gaps in his nutrients, and toxins in his body.  Fighting the Lyme bacteria, Borrelia, became the main focus.

Our friend, whose body has responded in the same way as my husband’s, behind his progress by about 12 months, is equally intelligent.  An engineering, scientific mind, very up for the challenge of solving a puzzle.  He reminds me of Jim in so many ways.  They are both very capable of considering patterns and data sets, and able to shift through details page after page (something that would turn off many people).  Our friend, however, had a different take.  His focus is completely on the neurological aspect of things.  The Lyme bacteria are secondary.

While listening to our friend speak and while trying to be the voice of my husband, I was struck point after point, minute after minute at how these two men were looking at the same problem with completely different views.  I couldn’t be more surprised at how little the intersection was between the two research focuses.

If my husband Jim had his physical voice, I am sure the synergy between the two men would go further than it is currently.  Both men are hard-working, and full of energy (even considering the current illness and health decline).  I know they would be able to battle it out, pulling in both perspectives and ideas and gaining a foothold on this horrible illness.

Then I was reminded of a recent seminar that I attended.  It was fantastic, given by a microbiologist who studies Lyme.  After his talk, I asked him if he ever attended the Lyme meetings, especially because at this point his research is not published.  He looked at me strangely and then commented “Oh yeah, we’re really separate.  We don’t really get into the clinician side of things.”  Oh, the synergy lost!

What could happen if the research biologists and the clinicians really battled it out in a room for days?  The voice that could be attained and the brain power that could tackle, really tackle, this horrible disease.

Different perspectives are good.  Different perspectives shared in a room full of people with the same objective and the same open mind, working to solve a problem, even better.  How (and where?) does one find this ideal world?  We certainly don’t have it today – at least not when it comes to solving the Lyme disease problem we have.  When do all the voices get heard?  The synergy that could rock this epidemic world would be intense.  That would be not just great, it really would change the game.

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