The Phrase I’d Want My Younger Self With Multiple Sclerosis to Repeat
When you were diagnosed with multiple sclerosis (MS), the news was unexpected and devastating. But I reassured you that MS doesn’t signify the end. This new journey will be filled with incredible experiences. At the same time, I was up front by warning you there would be challenging times ahead.
This morning, such a time truly arrived. You’re not even properly awake, and you start punching something hard in your bed. You can’t work out what it is. Then your stomach drops. You realize you’re hitting your leg. Yet it’s numb. You can’t feel it. Worse still, the other leg doesn’t want to move, either.
Within a few hours, you’ll be in a hospital bed. It’s a shock. Lying under fluorescent lights in a sterile environment. Surrounded by beeping machines, tubes and strangers while grimacing in pain. I know you hate needles, and you’re now in a constant state of queasiness.
It’s not just your physical surroundings. It’s the reality of this new level of dysfunction. You look at your legs, and they feel disconnected. Over the coming weeks, you try so hard to will your toes to move. But no matter how much mental energy you channel, your body is non-responsive. It’s unbearably deflating. You feel claustrophobic and trapped in your own body. You’re worried you will never walk again.
Emotionally, you also struggle with this new level of dependency. You have valued your independence in your mid-20s. Studying, establishing a career and planning for the future. But now, none of this seems relevant. You despise not being able to function without assistance. Negotiating bed pans, being bathed and dressed. The thought of requiring this level of care for the rest of your life is nauseating.
During this time, MS becomes your identity. The hospital environment encourages you to become one with your disease. Interactions are based on what you have, not who you are.
For example, your doctors (fortunately, not your neurologist) do their rounds, test your symptoms, talk about you among themselves, write notes but rarely share their insights or ask how you’re feeling.
Your nurses usually don’t modify their interactions based on the individual. They talk loudly and simplistically, assuming your impaired mobility has impacted you cognitively.
Medical students eager for you to recount your medical history take note of your every symptom and practice their neurological-testing skills.
You begin to think, “I am MS.” You feel invisible. You withdraw. You lose your voice. You wonder whether anyone can see you — the person, not the symptom or disease.
If I were there, I’d ask you to repeat this phrase over and over:
“I am more than my disease. MS may be the reason for my stay. But it does not define who I am.”
I could spend my energy telling others of your attributes, achievements and dreams for the future. But when you’re lying in the hospital and feeling overwhelmed by your situation, it’s more important for you to remember you are more than your disease.
Next week, you will overhear doctors talking to each other: “At least she can use her arms.” “The relapse is aggressive.” “Damage may be permanent.” These words will create unbearable anxiety and fear.
But remember, “You are more than your disease.” These doctors can’t see your tenacity. Your determination. Your fight. Such qualities aren’t quantifiable. They don’t appear on neurological tests, nor are they considered when prognoses are inadvertently delivered.
When faced with a hospital stay (sorry there will be a few more), the qualities you’ve displayed in all aspects of your life won’t abandon you. These qualities define who you are. Not MS. And these qualities will influence your recovery and how you respond to any of life’s challenges.
The next few months are going to be tough, but you will get out of bed, out of the wheelchair and walk again. It’s going to be a grueling process, so here’s an incentive to keep going. Next year, you celebrate your good health by immersing yourself in the freedom of travel. You will experience new cultures, meet new people and be surrounded by new beauty. You’ll reclaim your carefree 20s and overcome your memories of this hospital stay.
Be inspired, be excited and keep remembering you are more than MS. It may be a part of your story. But it does not define who you are.
Teisha (15 years older and wiser!)
Follow this journey on Lives Interrupted.