Posts Tagged ‘Lyme disease’

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.





Holiday Reflection Time

This time of year always brings out the glad and the sad at full face value. Not that the sadness is not present throughout the year, it’s never fully gone as a widow, but it is more subtle than during the holiday season. I choose to see the good in life and can push back the sadness that comes when I think about my late husband. During the holidays when there is a conscious direct acknowledgement of family, gratitude, precious time and life, gifts of grace, and joy, reflection is more direct than over the previous many months. Such deliberate consideration of life comes when my young daughter asks me to write down what I am thankful for, complete with justification. It comes when visiting the house of friends for Thanksgiving dinner and watching the interactions of couples and children. It comes with the time off from work and school and the ability to sleep in and have lazy mornings and time for pensive thought.

It is during such times that I am reminded of how grateful I really am for all that I have. It is also during these times that the underlying sadness of what is present consistently decides to rear its head directly and gives me pause. I have now been a widow through two holiday seasons, with young children that would be thriving with my late husband’s attention and love. We have lost much, especially when I think of potential future – what would my children’s personalities be like with Jim in the picture? What lessons are they missing out on that Jim would have given that I cannot? Will they be at a disadvantage compared to their peers because they didn’t have his attention, direction, and love? Will they grieve as they age and feel a gap in their lives?

The ultimate question becomes one of provision – that is, will I be able to give my children all they need to be successful, thriving people? With this mindset, the goal of helping my children do just that takes center stage and sadness once again gets its rightful place as a backdrop. The reminder that there is so much good in the world still overrides the sad card. The holiday months bring out a more direct attention to what is good and what is possible still – not what is lost, as much as what is to be celebrated. My late husband Jim is to be celebrated, the amazing new opportunities that have appeared in our lives are to be celebrated, and the excitement of what is to come is to be celebrated. During this time of year I am reminded of gifts to celebrate – gifts of people in my life, gifts in the form of reminders at the precise moment I need them, gifts in the form of grace, gifts in the form of Jesus coming to earth. And because of this final gift, we are guaranteed that we will see Jim again and that for now he is active and joyful in heaven.  I now understand that Jim wants me and our children to be happy on earth.  I did not know this last holiday season.  I do realize that this holiday season.  And that is a big cause for celebration for us all.

My 7-year old daughter's reminder that life is to be celebrated

My 7-year old daughter’s reminder that life is to be celebrated

What Had Death Done To Me?

What has death done to me?  This was a question posed by another widow who wrote an article about change and moving forward several months ago.  This question was buried in the middle of that article, but it popped from the screen and seemed to etch itself in my brain from that moment on.  I thought about how I would answer that question.  Became overwhelmed and unsure.  So I did what made sense – I pushed it to the back of my mind only for it to resurface again a few days later.  This pattern continued for weeks until I finally decided to try to articulate what death has done to me.

It is so complex and hits on so many levels that trying to succinctly state something seems disingenuous.  It is almost like if I summarize in a paragraph what Jim’s death has done to me that I would somehow be dishonoring my husband.  But still when I am honest and I consider the pattern that I see in much of my attitude since his death, I recognize that much of what has happened to me is ironic.  As a result of Jim’s death I find myself being more open, more out there in terms of connecting with friends, expressing my thoughts, not wanting to dwell on the trite but to be open and honest.  Many people have the opposite occurrence.  They become more reserved and sometimes even closed.  For me, things (events, happenings, people) are more raw now.  They hit at a different level which is hard to communicate.  There is a boldness in how I approach things that is different from what it was before.  And the openness to it all is apparent.

This open quality is not something my oldest friends or family would say has been with my for the long haul.  In fact, I believe I was very much the opposite.  A private person by nature and happy to be open with loved ones, but it took time to reach this point when first connecting with someone.  When Jim started getting very ill years ago, we wanted to help educate other people about Lyme disease.  As Jim’s voice left him physically, I took on the charge.  It was not within my comfort zone, but I did it because it felt like the right thing to do.  Upon Jim’s death, another floodgate opened – this one even further.  Now I find that I tend to answer a person’s question fully and honestly.  I don’t stop short.  I am wide open most of the time.

As I have come to appreciate this new view of life that I seem to have acquired, it brings a smile to my face.  You see when Jim and I got married 16 years ago one of our favorite songs, one that we played all the time and sang at the top of our lungs and danced to in the late hours of the night, was “Wide Open Spaces” by the Dixie Chicks.  The song deals with wanting freedom and wanting a new life and wanting to become the person you were meant to be.  So in a strange way, there is a circle that seems to have been completed.   The rawness and the boldness of the future unknown.  To be open to it regardless of where I have been in the past and to be fully immersed in the now.


(below:  Valentine of Milan Mourning Her Husband, the Duke of Orleans,
by Fleury-Francois)

Can a 25-minute encounter change your life?

The doorbell rang.  I was impressed on the punctual arrival.  A sweet elderly lady greeted me with a smile.  She had travelled an hour to pick up a hospital bed for her husband.  The same one my late husband used.  We went to the garage and I showed her how to put it back together (it was in parts for easy mobility) and we talked logistics.  Then the question came, “Why are you selling the bed?”  I had to explain.  I was grateful for the question – so many people avoid talking or asking about Jim these days for fear they will upset me.  She looked shocked.  I was reminded how shocking it is that neurological Lyme disease can kill a person.  Then she told me her story.  Her husband had a stroke.  At first the physicians misdiagnosed it as Parkinson’s disease.  Then while he was walking in his disabled state, a car struck him.  I was horrified for her.  We both fought back tears.  We talked about the pain of seeing someone you love suffer and the frustration of not being able to help them in the ways we would want to.  Then she announced, “Come meet him.”  I didn’t realize he was in the car.  We walked over and I opened the door.  Another lovely wide beautiful smile.  A face aged by years of “doing”.  Wrinkles, crow’s feet, and signs of stress and age on the face.  A beautiful face.  We chatted for a bit and then I excused myself so I could get the bed into their van.

After we loaded up the bed, the woman asked, “How much do I owe you?” as she pulled out an envelope of cash.  “There is no need,” I replied, “I hope you enjoy the bed and that it is helpful for your husband.”  Then I paused and added, “I’m happy it is going to you both.  It served Jim well and I hope it does the same for your husband.”  Again, the woman had the look of shock on her face.  “No, I insist I pay you something,” she protested.  I again said no.  Then her tears flowed, she embraced me with the biggest bear hug I’ve had in awhile.  “God bless you,” she said.  “God bless you too,” I replied back.  She stood back and then came to hug me again, so genuine in her gestures.  Several more times she commented “God bless you,” and she meant it.

I approached the man again in the passenger seat.  His wife had told him the bed was a gift.  He started tearing up and then the tears started to fall.  The three of us were all there crying with the connection of pain, blessings of having lived good lives, and the frustration that comes with the knowledge that things sometimes go wrong and you can’t control them.

As the van drove off and I waved goodbye, my tears continued to stream down my face.  This couple, elderly and so full of love for each other, had just blessed my life.  I was saddened in that I had thought Jim and I would get to that point – be the cute elderly couple who still enjoyed each other so much.  I was glad too though to have made a small difference in this particular couple’s lives.

My 25-minute encounter with these two beautiful people reminded me that there are blessings always and that even though we are not in control of events, we are still in control of our attitudes and perspectives.  Thank God (literally) for amazing people to come along and remind us of the important things in life.

The Last Words to a Dying Man

What a surreal existence to be between life and death, between now and ever after, between the seen and the unseen, between waiting – unknown – sadness – confusion – hope.

This is where I find myself lately. My husband, chronically ill with neurological Lyme disease and wasting away in front of my eyes with weight loss, muscle loss, and paralysis, is here now, but may pass at any moment. Any day. Any time. I go to bed at night wondering if the nurse will startle me awake in the middle of the night to the sadness that seems more and more inevitable. I go to bed at night considering what I last said to my husband, what I looked like in case this is the last image of me he will see, and contemplate how many more days he will be with us.

This evening I started considering last words. This was prompted by a letter that came in the mail. The letter contained the last words from a colleague, a note crafted in an effort to capture the essence of years worth of a relationship. Ultimately, it came down to one paragraph. The card itself was lovely – beautiful in material and verse – and likely to have been chosen after some deliberation. The words inside came down to a 6 sentences of final thoughts from one man to another. I am sure these words also came after much deliberation. What to say? So much time had passed, much sadness with a relationship that thought solid only to fade quickly when pressure came. But a relationship nonetheless. And a relationship at one time that provided nourishment for both souls. Although years had passed since the falling out, the betrayal, and the bitterness that had worn away the bond between these two men, their memories were there and the reminder that goodness can prevail regardless and that forgiveness has its place was evident with the arrival of the letter.

My husband Jim was awake when I came into his room, letter in hand. These periods of alertness are too few and far between these days and my surprise was clear when I stumbled into the room, scrambling to find my words. My choice was obvious – the letter was sent to Jim and it was my job to read it to him. I began, “The letter is from Josh Colleague.” I waited for a signal to proceed. There was none. There aren’t many signals lately from Jim. I proceeded. I showed Jim the card – read the card’s words and paused. Then I read Josh’s words. I found my voice crackling: I fought back the tears. I looked to Jim. Nothing on his face. This too is not unusual these days. Heavy medication and extreme, constant pain will do that to a person. I paused. I continued. The words were heartfelt. The overall message was “I remember” and “you matter to me.” I fought back the tears again.

Ultimately the words themselves were irrelevant. The note itself was the important part. The relationship. The reminder. The time someone took to acknowledge that another matters.

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.

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