I spend most of my time thinking and writing about what makes meaning. As far as I can figure, this is the core of who I am.
In years past, I was a singer, a small business owner, a teacher, trainer, instructional designer, healer, knitter, spinner, fabric artist, yoga practitioner, Zazen sitter, and breadwinner.
Now I am struggling to simply get up in the morning because I have late-stage neuroborreliosis, or Lyme Disease.
My identity shifts on a daily basis due to the constantly changing nature of my ability and disability. My limitations require me to make tough decisions about what is most important to me every moment.
It is a miracle if I can shower and dress (with no hair styling or make-up, mind you), and still have enough energy, mental clarity, or freedom from pain do to one more thing that day — like run to the pharmacy or grocery store, answer email, cook something, clean a small part of our home, deal with the never-ending cascade of medical bills and health insurance issues. I am not exaggerating.
Also, I must now take in to account my limited mobility. Walking more than a block or two causes me so much fatigue and pain that I’m always afraid I won’t be able to return from whence I came. I have a power wheelchair, which is fantastic when I can use it. But if it’s raining, or the sidewalks are clogged with snow, or if I must drive somewhere (our car isn’t big enough to transport the chair), I have two choices: Be in pain from walking, or don’t go. I often choose the latter.
My hands don’t work well any more (pain and lack of strength and coordination), so I’ve put all my art, spinning, knitting, sewing, fabric and silk painting, and batik in storage (the stuff I didn’t give away or sell, that is).
I’m trying to save my hands for writing. And cooking. I used to blow off preparing meals because it took away so much energy from writing and, well, everything else. But Lyme has given me so many food allergies (including autoimmune reactions that cause me to swell up like a prize pumpkin) that I no longer have a choice.
Lately, and I mean within the past week or so, I have started to occasionally accept the things I no longer am and can no longer do. My grief is intense. And it is renewed each time I find out one more thing that used to be easy for me to accomplish is now impossible.
On the other hand, when I accept what is now, it is a huge relief. It is a good (if difficult) practice to give up the business of constantly being surprised and then devastated by who I no longer am, what I can no longer do.
I’ve also become isolated. I don’t have the energy to regularly do the things that keep friendships alive and healthy such as visit, go on outings, throw parties, make phone calls, correspond on a regular basis, remember our last conversation or follow the conversation we are having in the moment. Really.
So when you see me, given the choice, please do not say, “Well, you sure look good!” Or, “My memory is terrible, too!” Or, “My knees hurt these days, too.” Or, “Aging is a bitch, ain’t it?” My symptoms are not due to age. You may even think your memory problems and pain are similar to mine — trust me, they are not.
I know you don’t mean it, but these kind of comments are cruel. They put me in the awful position of needing to either explain/convince you about how my symptoms are NOT like yours, NOT due to aging, NOT due to lack of exercise of taking care of myself, NOT because I haven’t tried a remedy you recently heard about (trust me, I have heard and probably tried, them all), or to just nod and smile, knowing that you don’t see me at all.
Ultimately, those kinds of comments emphasize how alone I am with my losses and my invisible illness. Rather than connecting us, they create a separate us completely.
If you want to be a good friend, try asking about what is really going on for me in the moment. Then listen. For example, you could ask:
“Is today a good day or a bad day?”
“How is your treatment going? Started any new protocols lately?”
“What’s new in your life?”
Another new identity for me that I have yet to embrace is that I need help with my day to day life. More help that you can imagine, because to you, I “look” fine. How could anyone who looks fine need help with housework, cooking, shopping?
If you have energy and feel moved to do a good deed, you can always offer to help. Even more lovely if you can combine it with a friendly visit.
TIP: Always offer a specific date, time, and task. General offers such as, “Please let me know if I can do anything,” while well meaning, are impractical to a sick person with memory problems. Some alternate suggestions for your consideration:
“Can I stop by and cook some meals to freeze with you?”
“Can I take you grocery shopping?”
“Can I come over and help tidy your house?
“Can I help with your laundry?”
Note that these things include a visit with me. It is unlikely I will invite you over for lunch, coffee, dinner, or the like because the prospect of preparing for entertaining is far, far too daunting.
But if you offer to come over — or even simply call to check in on me — somehow that is much less stressful. Don’t worry about overtaxing me. I will tell you if it’s really not a good time.
But if there’s any possible way for me to do so, I will say yes. Because, friends old and new, I miss you. I am isolated. I am lonely.
It’s all part of the new identity.
For more ideas about what to say and do, read But You “LOOK” Good! The wrong thing to say to someone with a chronic illness.
