Lessons Learned/Learning: Help


I was offered my first wheelchair ride through an airport a couple years ago. I wanted to say no. I wanted to say yes. Fortunately, Jonathan doesn’t have my hesitation. When the woman at the Southwest Airlines counter saw my crutches and asked if I would like a ride, Jonathan said yes. And I was so grateful.

(Video from a second wheelchair ride a year ago. Jonathan's iPhone time-lapse shows you my "speedy" ride!)

Neuropathic foot pain had gotten so severe, I often had to resort to using crutches for errands, or for long distances, like when walking in the 30-mile Chesapeake Challenge Walk MS with Helen.

More work, but I finished, despite the complaints from my feet.

(See note below!)

But making decisions about using assistive devices is fraught with complex emotions: I will use them! I hate them! I feel strong. I feel disabled. I will get where I need to go. I won't have enough energy.

Two summers ago, Jonathan and I were standing in line for the shuttle bus to take us to the Oregon Country Fair (which if you have never heard of or gone to, you must. If you have, you know the allure!).

I wasn’t going to take my crutches (they get in the way in big crowds, it’s easier to take photos without them), but the longer we stood, the more my feet began to hurt, and Jonathan asked if I wanted them. I hemmed. I hawed. I said No, I'll be fine. He went to the car and got them.

And I was so grateful. We were at the fair for eight hours, standing and wandering. The crutches saved me, allowing me to truly enjoy the event and my dear friend, Jody.

With chronic illnesses, somewhere between wallowing and denial is truth. I've had to accept my limitations. And then, to not feel guilty or weak, I'm learning to forgive myself. (P.S. This has been one of the hardest lessons to learn!)

I need to learn to say yes. To believe that giving in does not mean giving up. It took a shaman wafting smoke, chanting and swishing a palm leaf in the Amazon for me to see my true path. And my path did not include cleaning my house.

[See Be the Tree post about the shaman]

Yes, I need help, please. Thank you. Ugh. These words go against every prior fiber of my being. I am the one who helps! I am the doer! I want to cry.

I am learning to accept that this is who I am now. Someone who still does not give up, but someone who is grateful for help.

[NOTE: I discovered last September (thank you, Internet!) that Aubagio, the MS disease-modifying oral drug I had been taking for 4 years, was causing the neuropathy in my feet. For 2½ years, I have suffered with increasing pain—hence the crutches, etc. Who knew side effects could show up 1½ years later!

I stopped the drug (with my neurologist’s consent) and slowly, the neuropathy is improving. It’s still there—I still use trekking poles when hiking, and can't wear normal shoes yet—but I have put away the crutches.]

#MS #Aubagio #neuropathy #assistivedevices

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