Time Is A Luxury We Don't Have

“[…] I will remember you
Will you remember me?
Don’t let your life pass you by
Weep not for the memories […]”

-“I Will Remember You,” Sarah McLachlan

It’s spring, well at least technically, because if you’re in Michigan right now, it’s pretty freaking cold. But anyway, it’s spring. And with spring comes new life. No where is this more evident than in my blogging circle, as there are several bloggers who are pregnant/having babies. This is super exciting, but also gets me thinking a lot about time…

I recently read “Have a Little Faith” by Mitch Albom. I loved “Tuesday’s With Morrie” and decided to read Albom’s other books. In “Have a Little Faith,” he talks a lot about a second death, and not being forgotten after death.

And this made me wonder. Is this one of the reasons, maybe subconsciously, that many of us blog? On the surface, most of us do it to share our stories, and to help and inspire others. But could a small part of it also be that we worry, especially if we are taken before our time, that we will be forgotten? That the trials and tribulations, and the celebrations in our lives, will end up being and meaning nothing?

Time is different for those of us who are young and chronically ill. It’s no longer such an abstract notion, like it is for many healthy people our age. It is something more concrete, staring us in the face, and sometimes, if we listen hard enough, we can hear it ticking away.

I no longer measure time as far ahead as I used to. Days of little pain count for more than single days used to count for.

Maybe it’s not so much that we don’t have time, as it is that we don’t have the pleasure of being oblivious to the ticking of the clock. Maybe my friends won’t wake up tomorrow and realize the feebleness of the body, but 30 years from now, they’ll wake up, stunned that they are no longer the picture of youth. Hair grays, skin wrinkles, muscles become soft and weak, bones become brittle and stiff.

I know I am not ageless. My illnesses prove that to me everyday. I knew that less yesterday, and I will realize it more tomorrow. And I will be reminded everyday that some systems will work better than others. And eventually, some will fail, maybe even all will fail.

It’s not so much a question of if, but rather, of when. I’m not okay, per say, with this course of events. But I have no choice. That’s the way life is. And if time stops, there is no life at all.

Or maybe it’s that I wonder what causes so many of us to broadcast our lives, often very intimate details of our lives, over the Internet, to complete strangers. Is it because, when all is said and done, we are worried about being forgotten?

I stumbled across this article, which talks specifically about young people with terminal illnesses blogging about death, and chronicling their final days. The article states that our culture is very close-lipped when talking about death, but blogging is making such conversations more acceptable.

And there are many books these days – examples include “90 Minutes In Heaven” by Don Piper, and “The Five People You Meet In Heaven” and “For One More Day” by Mitch Albom – that in both fictional and non-fictional contexts, explore the question of what happens after life ends.

I’m not interested here in getting into what I believe or don’t believe about life and death. But I am interested in how the uncertainness of time impacts who blogs and why.

Why do we feel that this is our cross to bear, while most people live with their illnesses in anonymity?

Clearly, this is not a new question or concern. But who is exploring such concepts, and how, is new. Just as Facebook profiles come to immortalize those who have died, blogs too, become living records of those who write/wrote them.

So what do I want to leave behind? Right now, I’m just trying to figure out how to live life with illness the best I can. But we all have a legacy to share. And maybe, for me, this blog is a small part of that.

So how do you want to be remembered?

And how will make sure that happens?

(This summer I have plans to start a non-profit organization that deals with similar issues as those addressed in this post. More details to follow…)

Guest Blogger: Sara Gorman

About a month ago, I wrote a post about the book, “Despite Lupus”, by Sara Gorman. I enjoyed reading the book, but was left with a lot of questions. I contacted Sara, and she was nice enough to answer my questions, to be shared with my readers in the guest post that follows.

For those who haven’t read your book and/or blog, tell us a bit about yourself.

SG: I was diagnosed with systemic lupus 9 ½ years ago, at the age of 26. There was a time after my diagnosis where I just couldn’t imagine life ever being the same again - I never thought I’d be able to have children, I didn’t know if I’d be able to work, and I really didn’t know if my body could endure the pain and suffering caused by lupus much past my 30th birthday. Thankfully, things began to turn around once I started making changes in my life to accommodate the disease, a process I often refer to as, “working with the disease rather than against it.” It was a wonderful thing once I realized that life with lupus could improve, and that I could actually do something about it.

You refer to lupus as “she”. This is very interesting. How did this come about?

SG: From the very beginning, I thought of lupus as an adversary – as an opponent that needed to be won over, conquered, and even extinguished. It was just a natural step to personify the disease because it gave me an image upon which I could unleash my frustration, anger and resentment. In the end, I think it worked in my favor, because as I came to the realization that lupus really was an entity in and of herself – I learned that if I was going to live in harmony with the disease, I needed to give her the respect, consideration, and attention she deserved.

The spreadsheet is clearly an important aspect of your illness experience, but I worry that such cataloging would make me obsessive. Is there a happy medium between not knowing anything about ones illness and knowing every single detail? What does that look like to you?

SG: Sure! In my book, I offer a full spectrum of options – in-depth vs. not in-depth; long vs. short; thought-provoking vs. one-word (or number) responses – because most certainly, not every one wants or needs to create a spreadsheet. I can assure you, however, that any insight you have into what exacerbates your illness, what helps, what doesn’t, what medications are working and which aren’t, will undoubtedly give you a leg up in trying to live well with the disease. Anything you do – be it a tracking system, a journal, or a list you keep on the fridge of things to watch for– that allows you to become more engaged, enlightened and informed about your disease, the better!

You mention going to the National Institutes of Health (NIH) for a second opinion. Would you recommend that other lupus patients seek care at the NIH or other similar institutions (i.e. Mayo Clinic)?

SG: I had a wonderful and enlightening experience at NIH, so I would recommend it highly. However, what I would recommend above all else is that if you have doubts about your treatment, have questions about the manifestations of your disease that your doctor can’t (or won’t) answer, or feel like you need to get another perspective on what’s happening with your body, run, don’t walk, to get a second opinion, wherever that may be. There are so many reasons why seeking the help of another medical professional is a good idea – it will most likely bring to light options, treatments or therapies that you and your doctor haven’t explored and could (or even should), or it will confirm that your doctor has indeed been doing everything that should be done. T hat was the case with me – I went to NIH, and they confirmed that my rheumatologist was doing all the right stuff…it was just my disease that was out of control at the time. Thus, when I returned to my doctor’s care after a couple of months at NIH, I felt a whole new level of collaboration between the two of us. I was no longer scrutinizing his every move (because I realized that he really was doing everything he could to make me feel better – it just hadn’t worked yet), and I believe he had a new-found respect for his patient. He knew I was serious about getting better – now he could really get down to business.

You talk a lot about the workplace, and the way you describe it, the company you worked for when you first got sick and were adjusting to the changes that come with lupus, was very accommodating. What advice do you have for people with lupus who don’t find themselves in such an accommodating situation, or for people like me, who are in graduate school, where the implicit response is, “If you can’t cut it for any reason, you shouldn’t be here”?

SG: My office was extremely accommodating, and I consider myself lucky. And while I realize not everyone chooses to be open about their disease, I found that being upfront about lupus worked to my advantage. How else could I have explained my prolonged absences, or my reduced energy levels, or my inability to walk from one end of the office to the other? I tried to be very proactive about addressing the difficulties I faced at work – and that is the recommendation I would make to anyone faced with a strenuous or taxing work/school situation. Realize that your productivity, your attendance, your attention to detail, your ability to function, may slip – and you need to be prepared to address those issues. I would also recommend, no matter what situation you’re in, to really evaluate your work/school situation, and if you find that there are aspects of your daily commitments that are truly inhibiting your ability to live (and, of course, by my standards, I mean live well), perhaps there are some accommodations/ changes/ alterations you can make to schedules, workload, deadlines that will allow you to get better. I would encourage you to look outside the box – thinking of options that you may not even consider feasible – if your health is really suffering. Sometimes those changes can be very difficult to consider (and even harder to make), but if it’s your overall health and wellness we’re talking about…if it’s a matter of life and death…well, then, you many have to muster up the courage and inner strength to make them, so that you can even have options down the road.

Ultimately, you end up leaving the workforce altogether and “retire”. Do you have any advice for people with lupus (or other chronic illnesses) who aren’t in the position to take such a step?

SG: I had no idea I was going to let go of my career for good when I started down the path to living well. I made the first change at work because I literally could no longer function, but I figured I’d just take some time to slow down a bit, work from home one day a week, get some rest on my shortened work days, and then I’d be right back at it as soon as I “recovered.” But once I got a taste of what it felt like to feel good…and to be healthy…and to not hurt 24 hours a day, my husband and I realized that, that existence, whatever it looked like, was our #1 goal. And that goal doesn’t have to be reached by letting go of your career. That just happened to be the concession I was willing to make in order to make it happen. Yours may be completely different – I just encourage you to look long and hard at the obstacles that are currently keeping you from living well, and decide, based upon your own personal goals, dreams, needs, and desires, which one you should concentrate on removing so that you can live better than you are right now. It could be anything – treatment you’re refusing, the tropical, sunny vacations you don’t want to sacrifice, your “life’s agenda” you’re refusing to put aside – anything that is hindering your chances for a long, productive life. I talked of this very issue in a blog post recently on www.despitelupus.com, and a woman wrote into my blog saying that while she has chosen to keep her career, she chose to concede on having more than one child, because of her lupus. She felt that was an acceptable, necessary accommodation to make, in order to live well with her disease. It’s a very personal matter, and it takes some serious soul-searching to make the right choice.

You also talk a lot about pregnancy. You mention that pregnancy has a tendency to put women with lupus in remission, so it may seem like an attractive option for that reason. You also mention your sincere desire to have a family. What was it like working around your illness and working your illness into getting pregnant, with the final result being a healthy baby girl?

SG: For me, the most difficult part about wanting to get pregnant was realizing that my personal timeline for having kids might not coincide with the timeline that my body, my disease, or my health had for child-bearing (or rearing, for that matter.) Emotionally, it was very difficult to accept that I couldn’t do anything about that fact, and that I had to stop trying in order to allow myself to heal, emotionally and physically. I had to put my plans for pregnancy on hold for quite some time (years actually) while I built up my strength, got my disease under control, and got my body in a healthy, stable condition so that I could even start trying to have children again.

By the time I started trying again, I felt fabulous about the whole thing. At peace with myself, at peace with my body, and at peace with whatever was in store for the future. There had been so much desperation and panic surrounding the process the first time…and I realized after the fact that, that was no way to bring a new little life into this world. Of course, the greatest blessing is that little girl of mine. She is an absolute miracle – and an angel in every sense of the word…even on the days she doesn’t nap.

Your book is definitely a “must read” for those newly diagnosed with lupus. What advice do you have specifically for those who are lupus “veterans”?

SG: Just like I tell myself every day, I would remind the “vets” that living well isn’t a one time event. It takes a concerted effort and a daily commitment to managing the disease. I make decisions every day that perpetuate my desire to live well, despite lupus. And every once in awhile, I make a choice that doesn’t quite fit in with that motto. But the great thing is that every day, I have the opportunity to make the right choice.

A little off the topic of lupus, what advice would you give to patient bloggers, like me, who want to get published?

SG: The great news is that there are a ton of options out there for people just like you and me who have something to say. Self-publishing was an absolute dream for me – it worked within my timeframe (I was due with my baby in October of 2008, and knew that I could make my book “happen” with the limited time I had/would have), I got to keep control of my book, the content, the cover, etc., and financially, it’s worked out quite well. The flip side, of course, is that it takes a lot of work to self-publish, to market, promote, and get your book out there. And I had to work VERY hard to keep my expectations under control during the first 3 months the book came out. I was ready to hit it hard, but given that I have lupus, I couldn’t do that. I had and still have to pace myself…and my husband reminds me all the time that I can’t let writing a book about living well prevent me from living well. Smart, huh?

You title the last chapter of the book, “Life After Lupus”. What do you say to those of us who can’t really imagine that such a state exists?

SG: My reason for writing the book – my intention for sharing my story – is to provide hope to those who don’t have it, to those who have lost it, or to those who can’t seem to find it underneath the pain, suffering, and misery that lupus has caused. I was there not so long ago – and I am here now – poised and ready to tell you that life with lupus CAN improve – and that you can actually do something to make that happen. It might not be easy, or simple, or instinctual (which of us instinctively likes “compromising”?), but there are ways to make your life with lupus better, physically and emotionally. If you walk away with one thing from my book, my blog, or this interview – believe that you have the strength, courage, and hope to live well, despite lupus.

Thanks, Sara, for humoring me and answering all of my questions, for allowing me to share your answers with my readers, and for writing an informative and patient-friendly book about lupus. We can all always use lessons about living well despite illness.

And be sure to check out my post about the book, and make sure you head over to www.despitelupus.com and say “hi” to Sara!

Two Years And Counting: The Insight That Comes From Illness

On Saturday, my blog turns two! I can’t believe that I started this blog two years ago, just a week after receiving my diagnoses of lupus and rheumatoid arthritis. Since then so much has happened. Solu-Medrol infusions, my first inpatient adventure. I guess pretty much the usual stuff as far as these illnesses are concerned.

But other things have started happening in my life, too. I’m not sure when it happened, but these illnesses lost a bit of the primacy they had in my life. And I began to venture out in search of other things; love, romance, figuring out the things in life that really make me happy. And I’m not sure I would have been so keen to start such adventures if it weren’t for these illnesses.

I’ve come to realize that while illness made me doubt a lot about myself, there were parts of me that I must have been building up unknowingly. I don’t think it’s an accident that I really didn’t date much pre-illness. I think there were parts of myself that I needed to be okay with first. And I guess, in a roundabout way, I became okay with them.

For a while, I felt like I had given up on G-d, and didn’t know what role I wanted religion, specifically Judaism, to play in my life. I realize now that I did not turn away from G-d. In every morning that I wake up and persevere against illness, I am believing in something deeper than myself. This may not be the way you or my friends or my parents may conceptualize of G-d. They may see G-d as a more abstract and untouchable notion. But if I am going to believe in something, I have to believe in myself, and the journey that illness has taken me on, however fraught with difficulties it may be.

I had given up on the idea that life could be good, that I could be okay, really okay, in the face of illness. And it’s hard, for sure. There are days when I don’t want to get of bed and face the world. We all have our moments. And I’m learning to absolutely cherish and be thankful for the good times, when there is joy and little pain and I am happy.

The title of this blog is based on the song, “Closer To Myself”, by Kendall Payne. And I feel that this year, more than anything, I’ve done just that: “Digging deep, I feel my conscience burn/ I need to know who and what I am […]/ I’ve been everybody else now I wanna be/ Something closer to myself […]”

I think I’ve always been one of those people who wants to make a difference in the world. But illness has made me realize that before I can help the world, I have to help myself. I have to heal myself, if not physically, at least emotionally. And I certainly have a long way to go. I still have a lot of issues regarding my last two relationships, trying to understand how I let things get so out of hand. How I allowed myself to be treated in ways that I didn’t deserve. But I’m beginning to realize that despite illness, I am a good, worthy person.

I got tired of always being the one on the other side of the street when everyone else had crossed, even when the sign said “don’t walk”. When you live on what you think is the safe side, and that doesn’t work, it’s easy to move to risk and realize that, that doesn’t always pan out either. Illness has taught me that life is a constant balancing act.

And I’ve met someone who has changed my life. Talking to him on the phone or getting to see him is the best part of my day. I am a better person because he is in my life.

And there is somewhat of a disturbing realization. I’ve asked myself a lot lately whether I would change the way things are if I could. If there was a cure tomorrow, would I embrace it? Honestly, I’m not sure I would. Because I have to wonder the person I would be without illness. And even if a cure were found tomorrow, unless the offer was to reverse all of the time that has already been impacted by illness, I’m not sure that it would matter. I have been forever changed.

I was coasting through life before, not really stopping to look around and take in the minutiae that was happening around me. I enjoy being captivated by water about to boil, and watching long enough to prove that even if you watch a pot, it will eventually boil. I enjoy nature. I’m learning to embrace life. My life. Illness included.

I think I was living my life with a “today for you, tomorrow for me” attitude. I was living for other people. I wasn’t living for myself. But when you’re thrown into a situation where, in part, your survival relies on you putting yourself first, that equation suddenly changes and becomes “today for me, tomorrow for you”. And I’ve come to realize that there will be many tomorrows. Everything I don’t finish today will be there tomorrow. And if the people in my life are truly loving and supportive, they’ll understand this and be content with the choices I’ve made.

I don’t feel quite as hopeless as I used to feel. I can now look in the mirror and recognize the person staring back at me. Thinking back, it’s easy to not want to believe that I could have felt so down. But I was trying to figure myself out, and then illness came into the picture, and everything went off kilter.

I am so grateful for the community that has been created via my blog. I am so thankful for the support that you all have provided me. And I am so happy that you have been here to celebrate the good things and help get me through the bad. I don’t know what I would do without you. This blog wouldn’t be half of what it is without all of you, and I thank you for giving me a reason to keep soldiering on, on this crazy journey. Thanks for two eventful years. Here’s to hoping there are many more years to come!

When Your Body Calls, Who Responds?

“[…] And if you call, I will answer

and if you fall, I’ll pick you up

and if you court this disaster

I’ll point you home […]”

- “Call and Answer,” Barenaked Ladies

One of my worst fears was recently realized. I was “sick” with my boyfriend (the doctor). I got a lupus headache that totally ambushed me. It was a bad combination; my methotrexate day, time of the month, rain, and no coffee (TMI? Sorry!). I thought I had caught it in time, but before I knew it, I was laid-up on the couch, rolling around with nausea and dizziness, wishing someone would stop the incessant pounding that was pervading the right side of my head and my brain stem (or kill me).

In my past relationships, for whatever reason, I was never in the presence of the person I was seeing when I was flaring or not feeling well. And I dreaded the day when this actually happened.

But he didn’t run away. He didn’t coddle me to death, either. He was the perfect balance of caring and supportive, and hands-off. I felt terrible because he was leaving town for a week the next morning, so needless to say, the romantic night I had planned for did not go the way that I’d hoped.

But I guess that’s the way these illnesses work. If they were predictable, they wouldn’t be so damn frustrating and annoying. If they weren’t so pervasive, I would never have to cancel plans, plan like crazy, or totally kill a romantic evening.

I had tried not to open myself up to the possibility of him ever seeing me this way, but that’s not quite realistic, is it (especially when we are seeing so much of each other these days)? And the fact of the matter is, when it happened, there was nothing I could do but be a sitting…er, laying…duck. I didn’t have a choice in the matter. I was down and out.

I apologized a million times for the way the night had gone. But he was just glad that I eventually felt better. Better enough, in fact, to finish the three-quarters worth of uneaten dinner that he saran-wrapped and kept waiting for me at the table.

A few days later, on the phone, I could feel him going into “doctor mode”, asking me how often I get headaches like that. But he can’t help it, and I’m better for it. It may make me take some of my symptoms more seriously, and view them as less fluke-y than I have done previously.

And I do feel like there is a lesson to me in all this. And it’s a lesson I feel I should have learned already. When my body calls, I need to respond. Truth be told, I had rib pain a few days before, I had been feeling a bit run down, but I kept plugging away. I am a bit frustrated with myself because I feel I keep saying that I’m totally blindsided by symptoms when the reality is that there are signs there, signs that I opt not to notice, for whatever reason, until after the fact.

But just as it was hard to get diagnosed until I was dealing with a whole constellation of symptoms, it’s hard to be proactive when I’m not sure exactly what only one symptom means. One symptom does not a flare make. At least I don’t think it does.

And with the right person, anything is possible. Worst fears are no longer worst fears. And bumps in the road are just that. They’re no longer insurmountable if we can get through them together.

So for now, we’ve survived round one. We made it through the first incident of me needing to be scraped off the couch. It wasn’t fun, glamorous, or sexy, but in some ways, it felt totally natural, like we’ve been dealing with this stuff as a couple forever. It made me realize, for the first time, that I can really get through this, especially if I have someone by my side who is willing to stay the course with me.

And realistically, this kind of care and concern will be reciprocated. While he probably won’t feel good far less often than I will, I’ll be there for him, even if it is just to tuck him into bed.

The truth is, it’s definitely nice to have someone around in moments when I’m not feeling my best. But ultimately, first and foremost, when my body makes the call, I need to be the first to respond.