What you see is not what I get

High heels and handicaps

Myasthenia gravis is an invisible illness

This rare neuromuscular disease causing profound weakness is often misunderstood because weakness is invisible.

Weakness is invisible

You never know what will happen when you spend the night in a hotel room with a stranger. I needed a room for the first night of the conference and Jamie had an extra bed at the hotel. Turns out we were well-suited to be roomies. We both got a laugh over the fact that I didn’t realize she is in a wheelchair. She is highlighting various disabilities on her blog, Jamie’s Thots, and allowed me to contribute an article about what I wish people knew about myasthenia gravis (MG).

I could have written a book; I probably will.

What I wish people knew about myasthenia gravis #IHaveHeardofMG Click To Tweet
Invisible illnesses are hard for people to understand

I consulted my MG brothers and sisters around the world and posed the question, “What is one thing you wish people knew about myasthenia gravis?”  I tried to include every issue raised, hence enough material for a book.

2 Corinthians 1:6, “If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer.” NIV

I hope you will read my post (which has already been shared about 500 times!) on Jamie’s blog.

READ MY POST ON MYASTHENIA GRAVIS

Click HERE to read my guest post.

Thanks for the support from fellow MGers #IHaveHeardofMG Click To Tweet
I WOULD LOVE TO CONNECT

If you are visiting my blog, I would love to send my weekly posts to your inbox. I’ll need your email address above the JOIN ME ON THE PORCH button.

I would love to hear from you on my Facebook page too, especially if you or someone you know has myasthenia gravis or a related chronic illness.

I have found blessings in adversity and want the opportunity to encourage you.

And speaking of Jamie, I recently interviewed her on My Journey of Faith radio broadcast. You can listen HERE.

2 Corinthians 4:17, “For our momentary light affliction is producing for us an absolutely incomparable eternal weight of glory.” HCSB

Sharing spreads awareness. Thanks.

 

Good days, bad days and part-time handicaps

Good days and bad days

Yes, you saw me riding my bicycle again. Yes, I have a handicap hang tag for my car. What about it? I have good days, bad days and part-time handicaps.

Part-time handicaps and part-time faith

I saw the recognition in his eyes when I pedaled past him walking his dog. My feet securely clipped to the pedals, I logged about ten miles. When I got into my car, I noticed the blue edge of my hang tag peeking out from behind the papers in the side pocket. I haven’t touched it since June. You see, I have part-time handicaps and part-time faith.

If you know my story, you know the Lord mandated a year of Sabbath rest for me. For exactly fifty-two weeks I intermittently used a wheelchair or scooter and consistently parked in handicapped parking, IF I was even strong enough to get out of the house.

My other handicap is gradually improving too. I am able to play nine holes of golf as long as I don’t waste any effort on practice swings.  I finally look normal. Well, I definitely have a new normal.

THE OLD NORMAL

I was caught in a trap of endless activities. Honestly, it was stressful and exhausting; exhilarating and rewarding; and most of all it was fun. The shrill tone of my beeper routinely interrupted my sleep and created extra-large bags under my eyes so big I needed a porter to carry them. About the time I crawled back into the comfort of my bed and settled in, my alarm rudely called me out. Despite arriving to work early, I got behind and felt oppressed under pressure to hurry through the day life. The phone rang incessantly and I felt as if I were drowning and people were pouring water over my head. I developed super-human powers such as inhaling meals, changing into scrubs at the speed of light (sans phone booth) and leaping up the stairs in a single bound. Well, maybe not a single bound, but close. It was the most demanding, most fulfilling career I could have possibly chosen.

I wouldn’t trade it for the world

Ecclesiates 3:9, “What does the worker gain from his struggles?” HCSB

MY NEW NORMAL

Instead of being the doctor, now I am the patient. Rather than worrying about how many patients are on my schedule, I have to schedule my life around appointments. I exceed my maximum out-of-pocket expenses for insurance every year by spring. Instead of writing prescriptions, I fill them – lots of them. If I conscientiously coordinate my refills I can pare down my pharmacy visits to merely twice a month. I only swallow twelve pills a day now, which is an improvement from sixteen. I never know how I am going to feel today or tomorrow. As an added bonus, every three weeks I spend an entire day in the hospital for an intravenous infusion.

I wouldn’t trade it for the world

Hebrews 13:15, “Through Jesus, therefore, let us continually offer to God a sacrifice of praise-the fruit of lips that openly profess his name.” NIV

BLESSINGS IN ADVERSITY

It may seem odd, but myasthenia gravis has brought many blessings. I would never have chosen it, but I’m not sure I would trade it either. To be completely honest, some days I hate it. Actually, every day I hate it. Strangely, as I have improved I am struggling more to accept my limitations. On days I feel like “normal” is almost within reach I do too much and pay the price. I wind up wasted for a couple of weeks. When I am tempted to be sad, I remind myself of the gifts I have been given through chronic illness. I have been given the gift of time. Previously, I wondered if I would have enough time in the day, now I wonder if I have enough day to fill the time. Fortunately, I have discovered how much I enjoy spending time with my parents. I have reconnected with dear old friends and made new ones who are really special. I don’t miss the alarm, my fingernails cut to the nub or those over-sized bags under my eyes. I do miss unlimited strength, the ability to exercise and consistently feeling good. I force myself to focus on the joys of sitting on the porch, drinking a leisurely cup of coffee, mani/pedis, time with my kids, lunch with friends, blogging, speaking and writing.

James 1:17, “Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.” ESV

NOT WHO I AM

Last week I had a procedure done. When the nurse brought the consent form, I signed the wrong line. I’ve probably signed that form ten-thousand times. Out of habit, I signed on the physician line instead of the patient line. Funny how my old identity seems so long ago. On rare occasions someone calls me Dr. Henderson, it sounds odd. It is what I did,  but it’s not who I am.

Proverbs 22:1, “A good name is to be more desired than great wealth, favor is better than silver and gold.” NASB

Today I have been hardly able to get off the couch. Oh you saw me on the golf course? Well, that was my good day.

I wouldn’t trade it for the world

I don’t know all of the reasons God’s chose this path for me, but as long as it is His plan, I will walk it. Unless I am too weak, then He will have to carry me. I have good days, bad days and part-time faith. Whatever situation you are going through, I encourage you to open your eyes and look for the hidden blessings. Offer God a sacrifice of praise, because if you focus on the pain you will soon need anesthesia. I know, but I try not to stay there. Fix your eyes on the blessings in adversity and allow God to use it for His good purposes.

And you won’t trade it for the world

Focus on the pain and you will soon need anesthesia#sacrificeofpraise#rightsideuplife. Click To Tweet

Romans 8:28, “That’s why we can be so sure that every detail in our lives of love for God is worked into something good.” MSG

HIGH HEELS AND HANDICAPS

High heels and handicaps

AREN’T THESE SHOES ARE FABULOUS?

I recently wanted to wear them to a fancy party.  I knew it wasn’t practical, but, I had this beautiful red dress that just screamed for these shoes.  I have a closet full of shoes I cannot wear. I especially cannot wear boots.  Can’t even walk from the bedroom to the kitchen in them because they are too heavy. But, these shoes are light.  I’m only five feet tall, so if I’m going to wear a long dress, I really need high heels.  Myasthenia gravis causes fatigable weakness. That means the more I use my muscles, the weaker they get.  I am able to get out of the car and start walking and I am fine, for a few steps.  I can’t walk far. I know wearing high heels looks bad, but I am so tired of wearing flats.  The weight of the shoe is more important than the height. So here I go, high heeled and handicapped.

I AM GUILTY

I suspect you are guilty, too.  I have frequently judged others by outward appearance.  I guess that is why I am so self-conscious.  Recently, I was able to go to the store, which is an enormous challenge for me now.  Walking in from the parking lot, up and down a few select aisles and back to the car is rarely possible.  Then add the demand of removing items from the shelf and placing them in the cart, it wears me out.  Lifting groceries respectively from the cart to the conveyor belt is out the question, so I just ask for help.  Sometimes I park in the designated handicapped parking.  Sometimes I don’t.  On a recent outing I didn’t.  Obviously, if I was going to the store, I felt particularly strong.  The problem is I am overly ambitious and my strength is limited.  I tried to pace myself and walked annoyingly slow.  I barely made it back to my car and began to get too weak to load my little bag of groceries.  My strength was spent.

I HAD AN EMPTY SHOPPING CART

The corral was not far away by your standards.  It might as well have been  at the top of Mt. Everest for me.  I simply could not do anything about it.  So I left it beside my car and drove off.  It particularly disturbed me.  I experienced shopping cart shame.  Within one week I saw a social media rant about “healthy” people not returning shopping carts to the corral, leaving them in the parking lot to potentially damage our precious vehicles.  It hit a nerve.

I COMMENTED

I shouldn’t have.  Surely you can relate to that guttural impulse to make your case. I look perfectly healthy.  I have an “invisible” illness.  Muscle weakness cannot be seen by others.  Someone I do not know replied.

WHY DOES THIS BOTHER YOU SO MUCH?

Great question.  Simple answer.  Because I have personally been guilty of judging people in my own heart.  I’ve seen people who look healthy and accused them of being lazy, or worse, inconsiderate.  Now I have a completely different perspective.  We are only capable of looking at the outward appearances.  Appearance cannot tell the whole story.

ONLY GOD SEES THE HEART

He alone is able to rightly judge.  He sent Samuel to visit Jesse to anoint a king. Jesse had some big, strapping, good looking sons that fit the bill perfectly for a king.  They would have been obvious choices.  God rejected them.  He plainly told Samuel that He looks at the inner man. He chose the unlikely, younger son, David.   God seems to delight in choosing the unlikely.  If He chose the righteous, the talented, the capable; then His power would not be on display.  Instead, He looks at the heart and sees:

the willing rather than the winners

the failures rather than the fabulous

the potential rather than the powerful

MY CHALLENGE

The next time you see someone parking in a handicapped space, or riding an electric scooter who doesn’t fit the mold, consider that they have a hidden illness rather than assuming anything.  Then remind me sometime to tell you about the time I went ballistic  in the grocery store parking lot when I saw a woman let her cart roll into my brand new car.

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