Having multiple sclerosis is like being on a journey one needs to keep adapting to, as it changes.
I was throwing the ball for my golden retriever when it bounced onto an unreachable ledge. I watched her become antsy for a ball she could see but not reach and wondered what she would do. Her frustration gave way to a solution as she jumped from one lounge chair to another and then reached her paw toward the ball. It only took a few taps for the ball to fall to the ground. Victorious, she happily pranced toward me with the ball in her mouth.
As I gave her hugs and accolades, it occurred to me that this is what I do every day. I adapt to the world around me, doing my best to meet obstacles with solutions. This is not always achievable, and I easily become frustrated. Things I used to take for granted — getting up from the floor or couch, opening anything requiring grip, writing cards, walking my dog, and even eating without dropping my fork — have all necessitated modification.
This disease commands us to be continually malleable, as change is inevitable. Changes can be difficult to witness and often leave us emotionally and physically overwhelmed. When these occur, we can either refuse or embrace our new reality, and sometimes this is a process. I remember the morning I woke up unable to walk without a pronounced drag due to my left-sided foot drop. How could this be, as just yesterday I walked perfectly? I fell many times as a direct result of vanity and refusing to modify my footwear. Looking back, I laugh as I prolonged the inevitable despite my stubborn streak.
I have had to embrace serious manifestations such as dysphagia and dysarthria. Dysphagia is trouble with swallowing while dysarthria is trouble with speech. Both occur when the disease damages or destroys nerves responsible for each. A couple of years ago, I noticed I was mumbling and having trouble enunciating. I also had trouble swallowing food and coughed when drinking liquids. This has been both embarrassing and disconcerting. Sometimes full sentences are completely unintelligible, which can be upsetting when among new people. Additionally, food and liquid can sometimes go down the trachea instead of the esophagus, creating potential health issues. Difficult as it can be to acclimate, it is imperative to speak with your neurologist if you are experiencing either. Diagnostic testing can identify an issue and follow-up therapy can be helpful.
We all know heat is the MS patient’s kryptonite, and as with many of you, I have had to modify much of what I do when the temperature climbs. My personal litmus for air conditioning is 80 degrees, as I have learned the hard way that regulating body temperature is imperative. Living in Southern California, where outdoor activities are the norm, there are invariably those events I must miss to preserve my well-being. Missing activities we would otherwise like to do can be a bummer but pales in comparison to experiencing heat stroke and exacerbation. That said, the loss still stings. I have challenged myself to meet every loss with a new possibility or challenge. I encourage you to try something similar.
It is easy to feel like we adapt at the hands of a merciless disease; that we are the effect of causation that is out of our control. While it is true that we cannot predict how this disease will progress and afflict us, we can control our reaction to these afflictions. Managing our reaction does not mean we cannot be angry or sad, as it takes time to metabolize any loss. It does mean that we are accountable for our lives in spite of living with a perplexing and incurable disease.
|Read on: Multiple Sclerosis and Adapting: Modifying and Thriving|