Prairie Wanderer

 

The Dark Woods

Today’s wandering is not our typical jaunt. In some ways it is a mystery tour but not one that ends someplace fun. It is a journey we didn’t choose nor expect.  In fact, it has always been one of my greatest fears when I pondered retirement. This wandering is not one that we can easily map out, but it always ends in the same place. It will take us through those poetic dark woods, but I am truly hopeful that we will find bits of loveliness along the way. I will warn you, dear reader, that I’ve given you a lot of detail as I intend this to be a record of the past two weeks as well as a letter to you.  Skip down a few paragraphs if you want to read the ending first.

This past year I’ve been experiencing several seemingly unrelated symptoms.  My calf and foot muscles began to cramp.  I was exercising quite a bit, so I thought the cramps were related to that. My voice was getting rough and then began to get hoarse—my diagnosis was allergies. Then I began to have trouble swallowing and would choke from time to time.  I had no idea why, but I tried to ignore and just chew my food more thoroughly. When I got Covid in July, it became something I couldn’t ignore anymore. The coughing would cause me to choke and not be able to breathe. My doctor thought it was time to do more.

I went for a swallow test in August, and it showed that I had weak tongue and throat muscles, and food was indeed getting stuck at the top of my throat. The speech therapist suggested speech and swallow therapy and a visit to an ENT.  Because of insurance (always insurance) I had to wait for a referral and approval for both.  I started speech therapy in October and visited an ENT as well.  The ENT saw nothing in my throat that could be causing my choking and suggested a visit to a neurologist.  It isn’t easy to get into a neurologist in Wichita.  I was initially told it would be February or March before I could get in.  That, to me, was unacceptable.  At that point I did two things.  I started a prayer group on Facebook, and I contacted my doctor for help.

My primary care doctor is a Christian.  She let me know that she was praying for me and that she had reached out to a school colleague who is a neurologist here in town. Simultaneously her nurse and the ENT’s nurse began an effort to find a neurologist that could see me right away.  Several of my friends were petitioning God on my behalf for a quick appointment.  I fully credit all of those for my getting an appointment in October.  I knew that God was working on my behalf when I got that phone call.  I have never, to my knowledge, had a prayer answered so quickly and fully.  I was in awe and so thankful. 

Not only did I get a quick appointment but when I looked Dr. Mayans up online, I found that he is an expert on neuromuscular testing and disease—just the doctor I needed. Prior to my appointment I put together a timeline of all the symptoms I have experienced over the past year.  The list filled a page.  After some strength testing and looking at my symptoms, Dr. Mayans suggested having an EMG test.  He was careful not to say that I had any one condition but the one he did mention was the least of my worries.

I figured I would have to wait several weeks for the EMG, just like everything else and I wasn’t wrong, at first.  The scheduler called and gave me a date 5 weeks out.  I sighed and reluctantly accepted the appointment.  A few minutes later she called back and said she saw a note that Dr. Mayans wanted me to be seen right away and that she had an appointment the middle of November.  Okay, that was better than the end of the month. About an hour later she called again and said that doctor didn’t want to wait that long, and could I come in two days later? Of course, I said absolutely.  I had two thoughts about that sequence of events. First, I once again knew that God was in the details and was working on my behalf as an answer to prayers. Second, I became more concerned that there was something seriously wrong with me that the doctor had seen in my initial testing. I put that thought in the back of my mind and tried not to worry too much.

My EMG appointment was on Halloween, an appropriate day for that sort of ghoulish testing.  It reminded me a bit of Dr. Frankenstein experimenting in his laboratory.  I even had to sit with my left foot in a bucket of warm water.  When the doctor came in of course he made several jokes about what was to come, immediately endearing himself to me.  If you know me well, I have a rather dark and sometimes inappropriate sense of humor and his sense of humor meshed well with mine.  Now, if you’ve never had an EMG, I hope you never have to have one.  The test consists of two parts.  The first half was the placement of electrodes at several points along my leg and arm.  Then the doctor administered a small electric current of increasing strength to test muscle reaction.  That wasn’t too bad.  Kind of like when you get a bad shock from static electricity or when you touch one of those Van De Graft generators at the Science Museum. The second part of the test was worse.  The doctor then used a small needle and went back to each spot and inserted the needle under the skin.  I now know where I should get a tattoo and where I shouldn’t get one.  Some spots weren’t that bad.  Others were like when you get a bad technician inserting an IV.  You know, how they kind of jam the needle in and grind it around? Yeah, it hurt like that.  That was to test my nerve reactions to stimulation. After a few minutes of review the doctor came back in the room and changed our lives forever.

I cannot begin to explain the moment when you learn that you are going to die.  Dr. Mayans is very sure that I have Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig’s disease. (I guess there’s a reason that the Lou Gehrig Story was one of my favorite movies when I was younger).  Did I just bury the punchline?  Anyway, he explained that ALS is a disease of the motor neurons.  It gradually takes away all of your motor functions but rarely affects your mental capacity.  It is always fatal.  There is no cure.  Treatment is limited.  You basically manage the effects of the disease through assistive devices and equipment.  I asked what my life expectancy is and learned that 90% of patients live three to five years after diagnosis.  10% can live up to ten years.  5% of those live beyond ten years but that is very rare.  That diagnosis was the one he mentioned, the one I put at the back of my mind.  Ken and I stumbled out of the doctor’s office and spent several minutes crying in our car.

Again, God is in the details.  The reason Dr. Mayans wanted me to get in on Monday was because he was sure that’s what his diagnosis would be, and he knew he had an open appointment at the ALS Clinic on Wednesday.  Two days later we met all the therapists and technicians that we will be working with in the coming years and given more information than our numb minds can process right now.  But the information was very helpful and hopeful in a way that lets us know we don’t have to do this on our own or alone.

We’ve done the difficult part of telling family and friends.  It hurts my heart to cause pain to so many people who I love. I am just taking one day at a time right now. I can’t wrap my mind around all the physical things that are going to happen to me.  I can’t fathom dying in 3-5 years.  I say with bravado I don’t really possess that I am going to be in the ten percent that live beyond five years. My dear friend Patty says I’m going to be the doctor’s second misdiagnosis.  That is my prayer, and I am trying to give this disease over to God on a daily basis.  Meanwhile, Ken and I are going to make the most of the time I have as best we can.  He is such a good husband and helpmate, and I am blessed. Currently my speech is very weak and somewhat slurred.  My left side is very weak.  My right side is getting weaker.  I walk with a rollator (a walker with wheels) around the house.  If we go somewhere that requires a lot of walking Ken pushes me in a transport chair.  I am working on getting Social Security Disability and with that comes Medicare.  Once I am on Medicare, I will be able to get an electric wheelchair.  My biggest battle right now is conserving my strength.  It’s difficult to do anything—nothing is easy.  I’ve really declined in the last six weeks and my prayer is that my disease progression slows down.

People have asked what they can do.  Right now, we don’t even know what we need.  I know down the road that our needs will become greater, and that Ken will need more help.Keep in touch with me as I do get lonely. My world has shrunk to my house most of the day so I'd appreciate text messages or even a quick visit every now and then. I've also enjoyed the cards that a few of you have sent.  Please continue to pray for us.  I have a Facebook group called Laura’s Prayer Warriors if you are interested. God has already been at work.  I am learning to ask for and accept help, something not in my nature…I am the one who helps others.  I have so appreciated knowing you all are out there and are lifting me up in prayer.  That means so much.

These woods are dark and deep, but I have miles to go before I sleep.

www.als.org and www.teamgleason.org are excellent resources for more information.