As we’ve gotten through the holidays, and all the chaos and happiness and sadness that brought, I’ve been thinking a lot about hope, and about words. Vanessa says both more and less these days, compared to weeks/months/years past. On one hand, when we are out in public with friends or strangers, she can be incredibly chatty (way more so than Vanessa 1.0 who was more shy and introverted!), handing out Live Sincerely buttons and magnets to everyone in a restaurant, and loving to tell stories of her life to anyone willing to listen. On the other hand, when we are with her at her home, it feels like she is retreating more and more into herself and her own world. She’s still up and about and working on projects all day, but while working on that, she no longer pays much attention to the conversations around her, unless you expressly pull her in or engage her.

However, what occurred to me recently were the exact words she does say, when she does. They are, quite often, one of the following phrases:

• I hope so!
• I am trying!

Even when she doesn’t seem to follow what we are saying, she seems to sense the gist of it – and if it’s something we mention that could generally go well for us, she says “I hope so!”, and if we comment on something she has done well, she says “I am trying!”  Examples…

Me: “I have a meeting 11-12 today. So I can leave with you for lunch at 12. But if my meeting gets out early, we can eat earlier!”
Vanessa: “OK, I hope so!”

Billy: “Wow, you already scanned 745 pictures today. Good job!”
Vanessa: “Thanks! I’m trying!”

Christina, opening gift: “Yay! Thank you for these colored pencils, Vaness!”
Vanessa: “I didn’t get you that.”
Christina: “Oh, well you told me yesterday you picked them ou….  Billy was saying how you bought me more Christmas pres… Oh, well, I really like these! Thanks if you helped get them maybe.”
Vanessa: “OK!”    {this is not one of the above sayings, but still an OK said in the same uncomprehending-but-hopeful tone}

These words are less as expression of an actual, exact hope – she’s not really super hoping we can eat lunch earlier, or whatever it may be. She might not even say them appropriately in the conversation, like me saying I think my kids might be sick, and her replying I hope so! :P  It seems more a general vague statement, from Vanessa, as she tries to keep up with our words, and her life, and her own thoughts….. all I know is I am hopeful. And, I am trying.

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How powerful to think that even as comprehension fades, as memories leave, as confusion lingers, her strongest urges that still remain are of hope, and of always continuing to try. I find that when I feel like quitting, stopping, sitting, giving up, not starting, not changing, not trying….  I think of Vanessa, stripped of so much, yet STILL TRYING. What is my excuse, truly? Granted, she is not really also dealing with emotions and complicated schedules and thoughts like the lot of us are – but that drive, that is missing in me often, she has in spades. It’s something I aspire to be more like.

As for the hope… I struggle with that. Well not exactly – hope is my truest, biggest emotion, the one that defines my soul and my outlook, the one I have even when all else fails in a moment. I am nothing if not hopeful. Hope is featured in the pledge Christina and I wrote for this project. Hope comes easy for me.

But as Vanessa struggles, as this journey progresses, it’s  been hard for me to define my hope, direct it. What am I hopeful for, exactly? I am currently losing my sister, one of my best friends, my companion on this road for as long as I can remember (I was 13 months old when she was born, so yeah, I don’t remember life without her!). She has an incurable, deadly disease, that is taking away her vital physical and mental functions. I miss her already, and I hate that she is confused and alone bearing this disease in her body. I think daily of the upcoming future where she will be gone from my life, and grieve the thought. None of this is particularly…  hopeful, eh.

Sure, I could be hopeful for a cure….  and I am, for future generations of women, and men, and children, who will find their lives intruded on by this disease.  I am absolutely hopeful that one day breast cancer will no longer kill people to the tune of 40,000+ a year. I participate in research (women – you can join me in the Army of Women!) in as many ways as I can find (our sister design company donates to a local research lab, too). If someone wants to swoop in with a miracle and “cure” Vanessa, restoring her to her previous smarts and health and beauty and happiness – I won’t say no! But to say I’m hopeful my own Vanessa will be “cured” or fixed or brought back to health…. it’s just not true. I don’t spend any time on hoping for that, because I know the reality of her situation, and spending my efforts and time pining away for that  particular miracle seems downright wasteful, robbing us of our time together now, that can be spent working towards things that actually make a real difference, now.

However realistic/(some might say pessimistic?) that may seem, I’m really not without hope! I’m hopeful that our global society will make good collective choices to work together on the big things that really matter. I have hope in humanity – that overall, goodness will win and evil will be snuffed in a world that won’t stand for it. I have hope in the power of “us”, of the world raising good kids to have empathy and compassion and be smart and use that smart to help someone else. I have hope we will eradicate diseases that steal lives today. I have hope we can get along, and look beyond the differences of our neighbors to form bonds and friendships, and build bridges and communities and solutions. I believe in people, even when they are flipping me off in traffic, cutting me in line, or pushing around my kids at the playground. I feel hurt and pain and see horrible suffering, but I am hopeful that the good in the world outweighs the bad, in the end.

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Vanessa recently went to Alabama for an opening of the SCAR Project exhibit. She was so excited to see her other “sisters”, these other ladies who know too-well the journey she is on. Vanessa had a great time, and one of her SCAR sisters Sara has written about spending time there with Vanessa and Billy. I encourage you to read it in full yourself (her blog post is here), to hear her musings on living sincerely, Vanessa’s current symptoms and mannerisms, and exploring the concept of hope to her. I greatly enjoyed reading someone else’s perspectives on seeing, loving, knowing Vanessa.

“…. At one of the breakfast dates, I asked Vanessa if I could look through her camera. After watching her at dinner, I knew her card must be overflowing. I wanted to get a glimpse at what she is thinking about, what is catching her eye. She graciously allowed me to look. It was fairly remarkable. I got to see the last several weeks of her life…some pictures that reminded me of the tag project but there were so many others that, well, they kind of took my breath away. What I saw must be what day to day life looks like when you actually pay attention. The details of a room…the artwork, the flower arrangements, the colors. The things we do to “finish” a look but then never pay attention to them again. Vanessa and Billy had gone to a restaurant called the Mellow Mushroom. Vanessa took all these photos of all these things in the restaurant. I went to the restaurant later in the weekend and it took me a bit to realize, I am sitting among Vanessa’s photos. She also had photos of an iron, standing up, laying down. Pictures like that. But I enjoyed the opportunity to see where her brain is at right now and watching it unfold in her pictures. …..“

At the gala event in Alabama, Vanessa had been invited to speak for a bit. She wrote her “speech” all by herself, consisting of an introduction, the Live Sincerely Pledge, and then a wrap up. She was so worried about it, but also so hopeful (there it is again) that people would embrace her message. I’d say they did – in her brief minutes reading what she had written, Vanessa mentioned the “fact” that she “didn’t have a lot of time left”, and said it very matter of fact and devoid of emotion in her current state!, but all around her lots of tears were shed and I know of 2 more “Live Sincerely  tattoos that were inked after that day. If you’d like to see her talk, you can find her at about minute 8 of this video from our friend Joules, for a very good example of how she is these days.

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My struggle, in the end, is trying to reconcile my hope, with my pain. It’s one thing to be hopeful for a future cure…  but my sister is dying, now. I will, for as far as I can see, lose her to this. Hooray for all future people who are hopefully helped…. but it won’t bring back my sister, the cousins my kids should have had, the life Vanessa & Billy should have had. I’m hopeful to have a good life ahead of me…  but how unfair to have to live it without Vanessa. And yet, so many people in this world with horrible problems, pain, suffering – even if I feel hopeful myself, how to feel hopeful about the world when there is so much bad going on?

What I’ve settled on is that, for me, having hope is NOT having a naive belief that “with enough __ (vague “hope”, wishful thinking, prayers, faith, likes, optimism, smiles) all will be perfect/fixed/wonderful”. I believe hope can mean remaining open to all kinds of possibilities, all of which have some amount of good to be found in them. Hope, to me, means knowing everything will NOT be great, could be ugly, and may be downright hard/stressful/sad – but being still sure that there is meaning and beauty to be found there, too. In this light, hope can include feeling sad, feeling worried, and not counting on a miracle (while also not counting one out in the corners of our heart). It encourages being realistic and present in the moment. It reminds us to look around and see that we likely have something right now that someone else is hoping to have, or find. That we are the bringers of miracles, and can be the bearers of hope for others when they have to set it down for a time. Hope means making miracles, ourselves, not just wishing for them. Hope is seeing the bad truthfully but making sure we still see the good – and maybe even finding good INSIDE the bad. Hope is agreeing that every day won’t be perfect, and being at peace with that. I don’t believe hope is feeling happy and blissfully ignorant all the time, and wishing really hard for the future to improve things – I think it’s being realistic, and seeing the good that IS there, already. And striving to make good in places where it can’t be found now.

We have to own our part to creating the good we want, the change we want, the world we want, from the life we have – not just blindly “hoping” something improves. Hoping passively, quietly, internally, is certainly real. Sometimes when I am most tired, my most sad, that’s all of hope I have left, and that is ok. But when I’m at my best self, ready to fully be, I see real hope as a precursor to action. I intend to hope loudly, outwardly, passionately, through my words and my actions and my plans. I’m sure I’ll mess up, and have to dial the hope up and down as life happens…  but I want to, and do believe I can, remain a hopeful person, through anything life has in store yet.

I hope so! I am trying!