"I Hope You Never..."

I would never have known the name Yolanda Foster were it not for her Lyme Disease. For the uninitiated (people like me who never watch The Real Housewives of Beverly Hills), she is one of the Housewives, and she’s been waging a very public battle to regain her health. 

On a recent episode, the other housewives were seen gossiping about Yolanda. They were wondering if her illness could be fictitious, perhaps an example of Munchausen Syndrome, or simply a bid for attention. It’s a story that resonates all too well with many Lyme patients. People either can’t get their minds around the scope and complexity of the illness, or they don’t want to believe it can be real because then THEY might possibly get sick too, or they inexplicably find it easier to believe that someone they care about is making everything up rather than give credit to their very real experiences. 

Many doctors fall into this category too, either laughing at their patients with, “Who told you that you have Lyme, ha ha ha?” or “We don’t have Lyme in ____ (fill in location here).” I’ve seen patients go into intense self doubt, romantic relationships fail, and people become completely estranged from their families over a Lyme diagnosis. I’ve seen lifelong friendships fall apart. We all have. It’s so strange, when we all know that if it was cancer, or HIV, or some other widely-accepted disease, the reaction would likely be to rally around the patient to give support.

The phrase that often comes out of our mouths is, “I hope you never have to go through what I’m going through,” or something to that effect. This is the right thing to say, the “higher self” version of a plea for understanding and support that’s gone unanswered.

And this made me wonder.

Is that statement EVER sincere, when uttered by a person with chronic illness trying to explain themselves to an unsympathetic, head-up-their-ass friend, relative or doctor? Can any of us really be that evolved? Because when I watched those gossipy women talk about Yolanda, all I really wanted to say was, “I hope one day you get your perfect little bubble burst, so you can understand what this is like for someone like her.” 

I'd like to see how these Housewives cope with what it means to have their integrity questioned as they suffer with as much grace as possible on national TV. My respect for Yolanda skyrockets as I see how generously she deals with these snipers.

I can easily and sincerely wish my supportive friends and family a lifetime without Lyme, because I see the compassion and the understanding, and I would never wish them ill. But it’s those “other” people I’m talking about. 

Because, if I’m honest with myself, my fondest wish for those who simply won’t “get it” is that they finally do. And since scholarly articles, lab results, personal experiences, videos, shared doctor visits, and multiple viewings of “Under Our Skin” have failed to do the trick – what’s left besides having that person walk a mile in our shoes?

Our higher selves, of course, recoil at the idea of wishing ill on anyone, or – God forbid – admitting it if we do. Knowing what we go through every day, how could we possibly wish it on anyone else, especially someone we love and who is supposed to love us? What kind of horrible person would do a thing like that?

Well, I guess I’m that horrible person.

That doesn’t mean I’d wish a lifetime of chronic illness on a person, but certainly a taste wouldn’t hurt. Just enough to trigger some badly needed compassion on the part of those who only seem capable of learning from personal experience. 

I realize that saying, “I hope you never…” has the effect of making us feel good about ourselves, looking selfless while we suffer – wishing everyone else well, all the while still trying to get across the point that this is one of the worst things that could happen to a person. 

There are lots of other instances of such statements, where people say one thing and mean another. I hear people say, “I’ll pray for you,” when it’s clear the meaning is, “You’re screwed, and you probably deserve it.” Or, “Bless your heart” when it’s really, “I’m so shocked I can’t believe what I’m hearing!” So perhaps we Lymies deserve a saying of our own, and maybe this is it.

Or maybe we need to be more honest than your average bear. Perhaps we would plant a more productive seed if we said something like, "One day, I hope you understand this better than you do now.” 

What I know about myself, and all the people I know who have Lyme, is that we’re not horrible people, even if we do honestly wish that those clueless "others" could experience just a bit of what we deal with. Because in the end, if those people who couldn’t show compassion to us were to actually get sick with Lyme, we’d be the first ones extending a hand to try and help. 

Because as much as we want the understanding, we also want our experiences to count for something. So that being chronically ill is not just a huge pile of meaningless crap.

And the best way to make that happen is show our higher selves to those whose curtain of ignorance has finally been lifted. And hope that someday, they too will pay it forward.

On Being Dorothy

In the last few days I’ve been noticing an internal resonance with the story of The Wizard of Oz, and particularly with Dorothy’s character. 

I realize that in the actual story, the Wizard isn’t really a wizard and is in fact a sham. I get that Dorothy had the power to grant her own wishes all along. None of that matters. 

What I resonate with is the HOPE.

Because when Dorothy first set foot on the Yellow Brick Road, she had nothing to go on but hope. And in about ten days I’m going to be embarking on my own Yellow Brick Road, taking a journey to a clinic in a foreign land where there are no guarantees. While my main purpose is to accompany my daughter so that she can have her wishes come true, I have a small hope in my heart that the Wizard may have something up his sleeve for me, too. 

My daughter has been dealing with a Lyme Disease diagnosis since 2010, when she was a sophomore in college. Mine came two years later in 2012, after twenty years of not knowing what was causing my supposed rheumatoid arthritis, fibromyalgia, and multiple other health problems. My son and other daughter were diagnosed later on. So we have four out of the five of us in our family with Lyme. This makes life difficult for everyone, and it’s not made any easier by the fact that what works for one of us doesn’t seem to be the answer for another. 

It would be easy to see this situation as a curse, but I’ve recently gotten in touch with the blessing, too.

Really? A blessing? 

Well, the truth is that I’ve gotten my own symptoms under enough control to live what I consider to be a very full life. I’m able to work, to give back, to travel, to enjoy my friends and family, and to go on fulfilling vacations. When it comes to the work that I put my heart into, I am living my passion and I know I make a difference. My main symptom at this point is pain, and I’ve learned to deal with that. So I would not go out of my way to seek additional treatment, since I’m already managing quite well. But because I have three kids with Lyme who have their whole lives ahead of them, and because I like to go support my kids when they get treatment (if they want me there), I’ve had the opportunity to accompany them and – while I’m there – try things for myself that I would never have tried otherwise. 

So in the summer of 2014, I went on a five week journey with my youngest daughter to Nevada (for ozone therapy) and to Idaho (for biomagnetic therapy), and I got treated too. This winter I’ll be traveling to Tbilisi, Republic of Georgia, to help my older daughter as she gets phage therapy for her antibiotic-resistant acne. She was told that they will test her for everything else she might have going on, and treat whatever they find, so she’s hoping to get treatment for other symptoms and conditions as well. 

I realize it’s a long shot, but while I’m there with her, I’m hoping they can figure out what bacteria could be keeping me in chronic pain, and that they have whatever it takes to get me well.

This clinic claims not to treat Lyme disease, but I’ve learned that this may be more of a cover-your-ass kind on disclaimer than the real truth. Certainly the woman I spoke to who went there for MRSA ten years ago (and who also had Lyme) returned in perfect heath and hasn’t had a relapse of her Lyme in all these years. And they do claim to treat some of the common Lyme coinfections, some of which I know I have. These can be worse than the Lyme itself, so although it’s a crap shoot, I have hope there will be something here for me too.  

I’m keeping my expectations as low as possible for myself, knowing that this trip is a very iffy proposition. The only thing I’m daring to expect is some quality time with my daughter, and a good outcome for her health issues. 

But maybe, just maybe, I’ll be further rewarded for taking this trip, other than my satisfaction as a mom.  Like Dorothy, I’m daring to hope that when it’s my turn to stand before the Wizard, there will indeed be magic.

Transition....Transition!!!

Imagine Tevya, the Fiddler on the Roof, standing on his rooftop, but instead of singing: “Tradition… Tradition!” the words are, “Transition… TRANSITION!!!”  Call it a mantra, a touchstone, a motto… whatever. This has been my reality for the past year or so, as we’ve prepared for a major shift in our family.

After months of preparation, and more than a couple of years of thinking about it, we have finally moved my parents, ages 86 and 83, into a seniors apartment complex. Their new home is one-third the size of their former one.

This has turned out to be harder than we realized, and has taken much, much longer than we planned. As we continue down the path of this process, I long for the joy and groundedness that I hear in Tevya’s rendition of that iconic song.

It’s been a journey of flexibility and patience. My husband and I never anticipated how much work it would take to clear out my parents’ house after they had left it. Downsizing significantly like they did involves leaving behind many mementos, curios, family albums, treasures – and also a lot of junk. It was up to us to work with them to complete the process, all the while being respectful of their boundaries and their lack of stamina. This was further complicated by the next step of the plan (still ahead), which involves us selling our house and moving into theirs.

I won’t lie. We bumped with my parents, big time. We had lots of things on our schedule, and our own finely-tuned timeline for moving, and we were naive enough to believe that any of that mattered in the long run. In reality, all of our plans fell by the wayside months ago when we realized we were not going to be able to do ANYTHING about our end of the move until my parents had fully vacated their house. And the bottom line is that there’s really nothing one can say when a beloved parent throws up her hands, in the middle of a very productive purging session, and says, “I’m sorry, but I just can’t do any more today.” And when that exhaustion leads to several days or even a week off for them to regroup before continuing, the progress can be agonizingly slow.

Learning to check my own impatience and selfish desires at the door has been eye-opening. It’s been a trying time, and also a sweet one. I haven’t forgotten for a moment what a gift it is to have my parents around for this journey. So many people end up doing this as a final step, after their parents are gone. In our case,  we’ve had the privilege of hearing the stories associated with their treasures – the mementos from their abundant travels, and the many items that had been passed down from prior generations. Family albums, autographed books, a personal inscription to my grandparents from Golda Meir… there’s legacy there, and memories, and I feel the sacred responsibility of being the keeper of all of it.

At the same time, we’re letting go of so many treasures that nobody wants anymore, but that have been in our family for generations. Like the plates my grandmother served gefilte fish on, and the wine goblets that we used at our family Passover seders around their big dining room table in Washington, DC. I felt a combination of joy and guilt as we hauled box after box off to consignment. I know that it serves no one to keep things that we won’t use, but deep down I feel like I shouldn’t part with any of it.

I take some comfort in the camaraderie I feel with others who are going through the same thing. When I talk about this with friends, so many of them have either just transitioned their own parents, or are preparing to do so. And I feel blessed and sad when I hear of a friend who’s had to do this same job after their parents were already gone. I recognize and appreciate that however trying, this has been a joint effort of love, and not part of the grieving process.

I’ve  learned a lot about Patience. And Gratitude. And Respect. And I’ve done my best to be gentle with myself as we all embrace this change – scheduling a massage or a pedicure here and there, or just giving myself fifteen minutes to read a few pages of a novel. The future I envision is bright. When this process is complete, my parents will be happily ensconced in their new place, and we will be living ten minutes away from them. My dad will come over to watch football, and I’ll be able to include my mom in mahjongg games, or pop over for lunch at their place. We’ll all enjoy a lot of family dinners together.

Meanwhile, as we renovate their old home and turn it into our new one, as we pack up our own belongings and declutter, it feeds my soul to picture myself on that rooftop – singing.