I am beyond touched by the outpouring of support shown by your messages on my last post. I’m overwhelmed by how many people wrote things like “You don’t know me but…” followed by “impacted my life,” “touched me” or other deeply moving comments. I am humbled in such a way that I struggle to put words to the page now and am honored that, despite your own personal daily challenges, you would chose to spend part of your time with us as we continue down our path.
As Maggie and I have read all your comments, we’ve cried what feels like a million tears. While this post may be out of character for me, I feel compelled to respond to what some of you have written. Never fear. I will follow this post with another status update, hopefully tonight.
Fellow Phase I Longhorn, I don’t have to imagine what it was like for you that day sitting at MDA. We’ve been there and I’m sad you are living it. Learning that while you were there, coping with needles, EKGs, PKs and all the other Phase I pains, you were wondering if we made it home brought immediate tears to our eyes. We are strangers walking together on the same path separated by just a few feet.
Tammy, it turns my heart to mush and puts a crinkle in my forehead to know that you and your brother are starting on this journey. I wish I could do more for you and for him than I’m able. Maybe, just maybe, by shining the light on where we’ve been, you can be better prepared than we’ve been and avoid some of the traps we’ve fallen into. Hopefully, you’ll never get to experience even half of the crap we’ve dealt with. At the very, very least you’ll know that you aren’t alone in your journey. And that you can have a lot of fun on along the way despite the urge not to. We have. And we’ll continue to. Just watch us.
Cynthia, Scott, Kyle, and Brooke – I understand that you are sad. We are sad, too, but for now we are together and it ain’t over yet. Regardless, wouldn’t you rather have deep, meaningful feelings sprinkled with occasionally intense sadness than to live a life overflowing with ambivalence? The depth of your sadness is a direct reflection of the heights of your joy and that makes for a rich, rich life.
Mirjana, please don’t be afraid of wishing for everything to be perfect! In fact, demand it! You get 30,000 days on this earth, give or take. Why waste one day settling for anything other than what makes you terrifically happy? The ten wonderful years I’ve shared with my wonderful wife have been like living a dream. Yeah, we are having a tough time right now but I’d rather live ten fairytale years followed by 50 years of happy reflection than 100 years drowning in mediocrity. Yes, of course, I don’t want the dream to end but sometimes we don’t have that option. Live it up! Demand happiness!
Speaking of happy, Francis and Karen, I am so, so happy for you both. We all got dealt a pretty crappy hand but you guys got a chance to screw the dealer. It could have been both, either or neither of us. Your lucky chance has shed a little light on this crappy, crappy situation. Maggie and I are both very happy for you both from the bottom of our hearts.
Kevin Cripps, while I have the kid-like urge to challenge you to a fight for kissing my wife-to-be, thanks for chiming in with your kind words. For what it’s worth (and she may blush that I’m telling you this) she thinks you might have been her first kiss. Okay, buddy. Behind the school, 5:30PM at the jungle gym. Be there and be ready. Bring friends.
Mel, Kate G, Lynn, New York, and so many other anonymous posters – I wish that you and your friend didn’t have shoulder the same pain that we are feeling. If the world were more “fair” then if such pain need be felt, only one or two people should be burdened and then it be done. Unfortunately, so many people are suffering from this damn disease. You aren’t alone, as caregiver or as friend. You have to find support for you. If you can’t care for yourself, you won’t be able to care for your friend. It’s like the airplane pre-takeoff lecture “If you are traveling with someone, place the oxygen mask over your mouth before tending to your companion.” I also know for certain that your friend or loved one appreciates all that you do for them. But don’t be afraid to ask them to remind you occasionally.
Carol, I am truly humbled by your situation. Please give your husband our most heartfelt hugs. And, for you, if I could wrap up just one smile from my sweetheart and send it to you, I would. It’s the single most incredible treasure I know, one that touches my soul. If I could, I’d share it with you in hopes that it would brighten your day. It always brightens mine, even on the cloudiest, most miserable of days.
Professor Osler, thank you for your kind words. I had to look up the word “pantheon” but now that I did, I’m pretty sure that if I was ever in the pantheon then I was either lost, just there to empty the garbage cans, or looking for Maggie. Oh, and I’m very sorry that you keep finding your heroes in bits and pieces. Maybe one day you’ll find a whole one. Have you checked the mirror lately? Or maybe check beside you in bed?
Finally, to A Friend Who Loves You Both, I understand and appreciate your intent. Thank you for taking the time to share your kindness. While we may not agree on how and when to express our feelings, we clearly agree that we want nothing but the absolute best for Maggie. On that common ground we can stand united. And we won’t be alone. At last count there were well over 100 people who had posted their same wishes for Maggie on this blog.
Thank you all.