Dear Friends, Just a little over a week ago JJ reached a milestone. He has now been in the hospital over 100 days. Think about your life over the past 100 days. For many of us, it went by unnoticed, but for JJ it has been a day in and day out struggle with the ravages of this wretched disease. Days filled with more downs than ups. Imagine 100 days full of bone marrow biopsies, transfusions, medicenes that taste awful and numerous tests, none of them fun. 100 days of hospital food where (and I kid you not) their idea of good food is a mound of mashed potatoes (no gravy) and a pile of cooked spaghetti with no sauce. With great anticipation for a cord blood transplant only to have it dashed by a formidable foe. Day after day in a tiny hospital room where the door must always remain shut to keep out infection, where your life is no longer private, where you are held hostage on your hospital unit by medical science that is treating your disease but sometimes forgetting to treat your humanity. Imagine being tethered to an IV pole for 100 days. An IV pole that is your constant companion. It goes with you everywhere you go. You cannot move through your room without caroming into something. Where the computer that controls the drip constantly malfunctions and blurts out an annoying beep that could care less whether you are trying to sleep or not. An IV pole that JJ has now named Al Baxter.
100 days of a lot of suffering.....uncontrolled pain at times. 100 days that included a bout of shingles, contaminated platelets, high temps, excruciating headaches of unknown origin, an aversion to food. And that's just the physical suffering. There has been emotional and spiritual suffering as well. Imagine 100 days in a tiny hospital room shut off from the rest of the world where your only contact with the outside is a tiny contingency of people who visit you because they are devoted to you, the constant drivel of the TV and the very loving, supportive comments of friends and strangers alike who post on the blog or email. It is hard to have a clear perspective when you are so sedated -you lose track of time, can't remember conversations, can't trust the razor sharp mind you used to have to be there for you . But this all adds up- layer upon layer until it is difficult to believe that you matter. This has been JJ's incredible journey these last 100 days.
And we who love him have been on this journey with him. It is important for us to bear witness to his suffering. It is important to him too. So at times we sit in silence next to his bed, as he sleeps. Not a restful sleep, but the kind of sleep that registers pain in his deeply furrowed brow. A sleep that is tortured by nightmares that only the unconscious can conjure up in the dark. So when he opens his eyes he sees the face of someone who loves him and has not forgotten him. And of course as we bear witness it adds to our suffering as we stand by feeling helpless and at times hopeless in the face of this wretched disease. We are so privileged to walk this journey with him-notably his beloved Sara, his loving brother Jason, his delightful nephew Camie, Cami's Mom- Katie, and me, his Mom. With others who have visited too. His devoted sister Reesa, his brother John, my husband Bill, Sara's family-Mo, Joel, Elsa. And then there is Steve, Jennifer and I am sure I have forgotten others. But our lives impel us to live them and so we do. But for JJ life is fragile and finite. He wonders, does his life matter? What will be his legacy? Will we remember him? Will you remember him? Will you study his profile in courage and carry that forward with compassion for others who will walk a similar path? So many of you have reached out to JJ and to all of us. We are deeply touched and we will pay that forward for the rest of our lives. But dear friends this is an aggressive disease that has attacked a gentle soul named JJ. He presses on. He inspires all of us but he needs us now more than ever. Because it has also chipped away at his spirit and his spirit needs an injection of hope, love and encouragement. He needs to know that you have not forgotten him, that he matters and that you are sending him your positive energy.
We are asking you to help us restore JJ's song-the music that plays sweetly in his soul. How you might ask? Here is how: Please send JJ a bell for Christmas. It can be a bell of any size. And with that bell a word of encouragement or if you know JJ perhaps a note that tells him what he has meant to you in your life. We want to fill his space with bells. Each bell will represent someone out there who is thinking about him and cheering him on. And then we will ring those bells to call to his joyful spirit. We know that this will be powerful and that not all medicene comes in a bottle. So if you are up for this please send JJ a bell for Christmas. You can mail it to: JJ Lehmann 14837 Crestview Ave West, Rosemount, MN 55068. Thank you for visiting his blog. Thanks for posting messages. You can also email him at followthebreath@hotmail.com Never underestimate the power of your love as you reach out to him and to others. Blessings to you all this holiday season, JJ's Mom
4 comments:
What a powerful call this piece is for all of us to wake up. I feel such a strong sense of love and support here. It is a reminder that we are all we have.
I am relatively healthy now, but in my life I have also spent 100 days in the hospital, not all at once, but the experiences were traumatic, even 20 or so days at a time. I can't forget them. They are imprinted into every cell in my body.
I bow to all of you that are going through this with JJ. I know, having been through "hospital hell" myself, that I would not be alive had it not been for the people who kept me afloat spiritually, emotionally, and physically.
I am so moved by your perseverance -- even when it seems soooooo hard to keep going. I know, it sucks to feel your freedoms have been stripped away and to feel deprived all of the time. It may be just a vain attempt at consolation, but I know for myself that I would not be who I am today if I hadn't gone through the years of pain that I endured. My freedoms were stripped away, yes, and at the same time a lot of other stuff, maybe called baggage, was stripped away too (there's still more, of course). And when it was most harsh and unbearable, there was nothing left to do but love. I see this kind of alchemy so vividly in JJ, even though I have not seen him in person for a year or so. I see how much love he has manifested in himself and in the world and I hope and pray that I can reflect a glimmer back to him.
Hey J.J., I just finished reading your blog, what a sweet mom, devoted family, and group of loving friends you have. I am heart broken that this bitterness of life is something you are now enduring. To suffer for something you have not asked for, and yet bear with great strength of spirit and dignity is the charachter of heros and saints.
Having known you only through a very distant family connection, unable to be present in body around you now,I wanted you to know that we continue daily to bring your struggle before the Lord in prayer. Having lost three children of our own, I know that the fear of death can at times be paralizing. Out of love I encourage you not to become paralized by that fear, do not let your heart be troubled - purpose in your heart that you will not be. Lean back into the arms that have held you from the begining and He will raise you up,He will fight for you when you haven't the strength!
JJ--I think about you every day. To show my support and love for you and everyone you are close to, I've sent you a few things. I hope you find the same pleasure in them as I do. Consider them small gifts from my life to yours. (I hope you have a dvd player or cd player handy...let me know if you don't.)
Although you might be searching for the strength in your body, I know you can find strength in your spirit and in your heart. I know it's there because like many people who know you, I've felt it before.
Stay strong. Your life is so important--not just to yourself but to many people in this world. I've told you this before, but you've touched and changed so many lives including mine.
I'm with you every day.
your writing is the best i have ever heard
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