Offering Hope and Love to Myasthenia Gravis Warriors

“Walking with us doesn’t have to be complicated, it just takes a choice.”

We read the well meant phrase often enough; “let me know if you need anything!” as we stare back through a screen, connected in the most disconnected of ways. But how many times do we find ourselves wishing that the cliched, albeit good intentions of another translated into practical help and support where we need it most, without the awkwardness or shame of having to send a message of S.O.S.? 

Myasthenia Gravis came into my life like a whirlwind, it’s symptoms quickly escalating from severe fatigue to respiratory weakness in a matter or ten days. My family and I  found ourselves in the emergency room four different times within a two week period, so severe and fast moving were my symptoms. The diagnostic process involved two spinal taps just 48 hours apart; the second spinal tap left me paralyzed from the waist down due to several rare complications. I was sent home a week later after being kicked out with a security escort, still paralyzed, after we insisted something was very wrong. 

I spent the next six weeks in a wheelchair at home or confined to a bed due to the paralysis and my increasing weakness. 

Concerned friends, family and neighbors dropped by and brought meals or called to check on us and we heard each time the invitation to call if we needed anything. But we found ourselves unsure how to ask, the needs were so great.  One evening however, a friend of the family dropped by unexpectedly after a long day at work and he had with him a special gift; he had taken the time to build me a ramp so I could get down the step from my front door in the wheelchair. 

After he was done installing it and I got to test out my new gift of freedom, he sat with us and visited. He looked at me and said something I will never forget; “Rebekah, that ramp out there? It is temporary. I made it that way on purpose because I believe that you’re going to walk again. And I want you to hang on to that.” He spoke with the grace and love of a father and I wept at his gift, overcome with emotion. He saw a need we didn’t know how to articulate and he showed up without us ever picking up the phone.

It has been seven years and like he promised, the ramp was needed for just six weeks, but it taught me a crucial lesson that I have never forgotten. We have opportunities in our lives to walk with our fellow human beings throughout many ups and downs. Some of us choose to stick around only for the good moments and others still simply don’t know how to respond to the bad, but those choices of investment change lives. 

Over the years, I have heard countless iterations of the invitation to call or reach out if I need something and while I always appreciate the heart that is behind such an entreaty, I find myself thinking back to the unexpected gift of a ramp and how a friend took the time to quietly walk with me and show up in the middle of the messiness. 

Sit with me during treatments, take me to the doctor, help me weed my flower beds or cut my grass, bring meals and paper plates, come sit and talk with me and forgive my messy home, call me once a week and tell me you’re thinking of me. Yes, it takes time and effort to pour into someone who is hurting, but it isn’t complicated. We just need you to show up, no matter what you are able to offer, because it matters far beyond what you could ever imagine. 

I believe we have to learn how to walk with our fellow human beings in this life; how to listen with patient grace, how to find ways to use whatever talents or resources we have to connect, support and stay the course when things get hard and life overwhelms us. It is easy to offer the entreaty that we are available to someone if the person struggling takes the time to call, but it can be hard for us to take you up on that. We don’t want to burden you or interrupt your life and sometimes, the truth of it all is that we just don’t know what to say, we just need someone to show up and let us know that we still matter. 

You see, it is easy to type something online and walk away when life is business as usual but it is a whole other thing when suddenly you are the one in need of support. After all, we once were like you too. Some come walk with us, let us tell you how we really are, no remedies or advice, no cliched responses; just the patience and grace to hear and affirm the truth of it all.

Walking with us doesn’t have to be complicated, it just takes a choice.

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