It has been three and a half years since I received confirmation that I had MG or myasthenia gravis. MG is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the voluntary muscles of the body. The name myasthenia gravis literally means “grave muscle weakness.”
Symptoms often vary in type and severity and may include a drooping of one or both eyelids, blurred or double vision due to weakness of the muscles that control eye movements, unstable or waddling gait, changes in facial expression, difficulty swallowing, shortness of breath, impaired speech, and weakness in the arms, hands, fingers, legs, and neck. When difficulty breathing or swallowing is present, a person with this disease may be in crisis and should be taken to ER immediately.
While the symptoms of the disease fluctuate, my awareness of the disease is always present and dealing with it brings on anxiety, frustration, ill-temperateness, and a host other negative emotions and actions. Yet, in the midst of this disease, I have discovered a few things that have been helpful to me. I have learned I must:
1. Adjust my expectations. Many easy, common tasks have become much more difficult and time-consuming. I no longer can use my gas-powered weedeater. After about two minutes I don’t have enough strength in my finger to hold the trigger down, let alone control the cutting head. If I kneel down, I can’t stand back up unaided. Often, I can’t even unscrew a bottle top from a soft drink. So I have had to learn to re-engineer the task where possible, slow down, control my frustration, rest when needed, yet plod on when able. In short, I have learned to cope.
2. Give people benefit of the doubt. It used to get under my skin to see someone park in a handicap space and then observe that they look perfectly healthy when they exited their vehicle. No more. I have learned looks can be deceiving. Although I have not succumbed to using a handicap sticker (stubbornness and a refusal to give in), I have on numerous occasions walked into Home Depot or Lowes looking perfectly fine only to find myself 20 minutes later, in the back of the store, wondering how in the world I am going to make it back to my truck. My legs suddenly have become noodles and my stamina completely spent. The fact is, I don’t have a clue what others are experiencing and so I have stopped judging. I have enough problems of my own without worrying about someone who seems to be okay with theirs.
3. Ignore callous people and be thankful for caring people. I belong to an MG support group on Facebook. The stories I often find there sadden me. It is incredible what some people experience from others including friends and family. Calling (or thinking) a person is lazy, expecting one to always be able to do or go, refusing to provide assistance, abandonment, are only a few ways callousness toward an MG sufferer rears its ugly head. Much of this stems from the fact that generally there are no visible signs of MG. A comment often heard is, “Well, you don’t look sick.” (To which the witty retort, “Well, you don’t look stupid, either.” is often thought but not voiced.) Fortunately, my brushes with callousness have been minor.
On the other hand, I have met some really caring people. Shortly after moving, I decided to replace all three commodes at our new house. I bought them at Lowes and had them on a flat cart in the parking lot to load them into my pickup when I discovered I had lost all strength in my arms. I was contorting myself in every way possible trying to muscle a commode onto the truck when a Hispanic man saw my plight, rushed over, and loaded the three units. For some reason, at times like this, I feel a need to explain my condition. However, upon realizing he spoke no English, I opted not to describe the effects of MG using my limited Spanish. I simply placed my hand over my heart and said, “Muchas Gracias, Hermano.” This is just one of many examples where people have checked on me, offered help, provided help, or otherwise exhibited a kind heart toward me.
4. Acknowledge caregivers are the closest thing to angels on earth. The role of a caretaker is not an easy one. Whether a doctor, nurse, nursing home worker, home care specialist or other, caring for those that are ill can be difficult and demanding. Surpassing those dear people are the caretakers who serve not out of obligation or compulsion but out of love. Day in and day out they perform deeds that are arduous, tedious, exhausting, and even yucky. Many do it tirelessly and without complaint. I am favored to have married one such caregiver. She has drug me in and out of the shower when I didn’t have the strength to do it on my on. Picked me up off the floor when I had fallen. Managed my IV as adroitly as a seasoned nurse. Concocted edible meals when my taste buds rebelled at all normal foods or when my tongue and throat muscles made chewing and swallowing near impossible. Cleaned, comforted, and cheered. I could go on but you get my drift.
Not everyone can handle being a caretaker. I have seen and heard too many tales of bad behavior or even abandonment by those who just can’t seem to manage it. So if you have a caretaker that truly cares for you, be thankful and express your gratitude to that person. If you are a caretaker, may God richly bless you. You are indeed an angel. (For a moving story about one caretaker of an Alzheimer’s patient, click here.)
5. Give glory to God. In spite of this crazy disease, I find that I function fairly well. This past week, I was able to write a bit, do some consulting via telephone, help my wife build a fire pit, and do menial chores around the house. For the things I am able to do, I praise God. My moment by moment relationship with Jesus brings order and balance to my life. He reduces the mountains to hills and raises the valleys to plains. He has even opened a door to use my challenges to help others in similar circumstances. I can’t imagine dealing with a debilitating disease without Him.
June is Myasthenia Gravis Awareness month. For more information go to Myasthenia Gravis – Official Site or to Myasthenia Gravis Awareness Month.