Thursday, October 2, 2008

Confessions of a Former Nurse

I often wonder what doctors think about while sitting on their swivel chairs across from me. Do I frighten them? I am their peer: young, educated, a successful academic, a mother, a wife. I’m not one of “those people,” who drank, smoked, ate poorly, etc. If it could happen to me, it could happen to them. Do I remind them that they are not immune to disease and death by virtue of their academic pedigrees and thick wallets?

Or do I remind them of their impotence? They cannot cure or even control my disease. For certain scleroderma-related problems, like renal crisis and pulmonary hypertension, doctors can offer patients life saving treatments. But for many of scleroderma’s manifestations, there is little doctors can due to ease diseased-associated pain or organ malfunction. And I happen to be one of those patients for whom no useful treatments are available. Along with me, my doctors are often simply waiting to see what course my disease will follow: fast and furious or slow and steady.

But they aren’t impotent. Yes, I am going to die long before I become eligible for AARP membership. For years, my body fell apart little by little. My doctors monitored my disease progression, tweaked medicines to make me more comfortable, and stood at the ready to pull out their arsenal of “big guns” when if I should ever decide that I was desperate enough to try anything. The “good” doctors knew me as a person – a professor fond of teaching and research, a wife, a mother of two young children, an amateur chef and seamstress, a gardener—and, by doing so the gained my trust. To the “so-so” doctors I was just another patient in a long line of many. One refused to call me by my first name despite my repeated requests. I remained “Dr. Mayer” to him until I decided I needed to be on a first name basis with my doctor.

I suppose that health care providers find it difficult to establish personal relationships. Keeping emotional distance makes it easier to bear the inevitability of patient’s demise, especially in life-threatening diseases like scleroderma. Some doctors think it is unprofessional. Others buy into the idea that “Doctors Cure; Nurses Care,” absolving themselves of their duty to their patient, the patients illness, and how it effects their lives.

The inpatient hospice is a small 6-bed facility, which allows patients and staff time to get to know each other a little on this important last leg of life’s journey. Nearly everyday I have a five to ten minute conversation with one of my nurses and learn a little bit about them. They listen to my fears, they offer reassurance, and they share their experiences of helping people through the dying process. They cradle me and kiss my hair, they sit on my bed and talk, they see my as a person, not a patient.

My worst hours are between midnight and two when a nurse named Mary is usually on duty. I awake sometime during those hours drenched in sweat and shivering from head to toe. An angelic figure appearing out of the dark, she dries me off and changes my linens and puts me back to sleep. “You are so caring, Mary,” I told her one night. “You are easy to love,” she answered, “I pray for you every day.”

I used to be a nurse. I was attracted to the field because I was social and, honestly, young girls in Northeast Philly didn’t set their career ambitions too high. Surrounded by so many loving nurses here, I have started t think back to my nursing days. Sometimes I wonder if I was a bad provider. Did I dismiss my patients concerns? Was I rude and uncaring? Was I indifferent to their suffering?

When I was in nursing school, I worked on an adult medical unit. Most of our patients were receiving chemotherapy or early victims of the AIDS epidemic. I spent most of my shifts dressing bedsores that developed from the combination of being chronically ill and bedridden. I can only assume the sores where incredibly painful though most of these patents had grown used to the unrelenting consequences of their disease. I do not recall ever having a patient cry out during a dressing change.

I changed many dressings during that summer, but two patients stand out in my mind. On of them was a tall black man with metastatic cancer; he was thin, dark and tall like a Masaii warrior. When I met him his was on the losing end of a devastating battle. I remember walking into the dimly lit room and thinking that he seemed very sad and very far away. I told him my name and that I was there to change his dressing. As I unraveled the gauze I tried to focus on the task at hand. Having only worked for a couple of months, I was relatively new to doing dressing changes independently. And I secretly dreaded them. After I had removed all the gauze, I saw what remained of the man’s penis. The ulcers had consumed so much of the tissue that in parts, I could see the catheter tubing peeking through the remaining areas of healthy skin. “No wonder he is so sad,” I thought. How horrible to suffer in this way, to lose your dignity as you lose your life. I recall that I changed his dressing in silence and said good-bye.

Another night I was assigned a breast cancer victim in her early 30s. I had developed the habit of reading patients charts, especially their patient histories. I didn’t know what the field of public health was yet, but looking back, I realize that I had been fascinated by epidemiology, the study of diseases in populations. With all my patients I wanted to see if there was some clue to how they arrived at their unfortunate destination. Reading the women’s chart I felt frustrated. She was a healthy aerobics instructor with absolutely no risk factors. She was a model of clean living. “How could that be?” I thought naively, “There has to be a reason.”

I entered her room and greeted her. I’m sure I told her that I was there to dress her wounds and prepared my supplies. When I lifted her gown I was surprised to find that the bandages covered her entire chest. I removed the bandages while the patient lay there quietly. When I reached the final layer, I discovered that the woman’s entire chest wall was covered with tumors. It looked like mushrooms were growing out of her skin. I was shocked and went through the motions of changing the bandages without uttering a word. I felt certain that if I opened my mouth I would not be able to control my emotions. She lay there throughout the dressing change stoic and distant.

I think of those two patients now and then. They must have felt so alone in that room with me as I changed their dressings like some mindless robot. I was trying to be professional; I knew the last thing these patient’s need was to comfort a young nurse. Now I think to my self, “Would it have been so bad to cry?” or to say, “This is not fair.” I wish that I had had the maturity and strength to look these patient’s in the eye, hold their hands and say, “I’m sorry for what you are going through.” I wish I had pulled up a chair and given them the opportunity to share their grief and anger and sadness. But I was too young and stupid and na├»ve to know how awful it is to be sick and suffering and facing your mortality. I try and remember that when I experience the callousness of providers. I try to remind myself that they don’t understand or know what to say, so they say nothing. Just like I did 16 years ago.

Now on the receiving end of care I realize the healing power of a good nurse. I wish I had see it back in my younger days and used it more effectively.

After experiencing a good week of cough control without nausea, the nausea is back full force. This has always been the pattern a one-week honeymoon on narcotics followed by a week in bed with crippling abdominal pain. I now need help to walk from the bed to the bathroom and I am gasping for breath when I return to bed. I am being to accept that this is a battle that I cannot win.

Perhaps some will think less of my or consider me a quitter, but I can suffer no longer. Today we are going to discuss a plan for slowly backing off the TPN. Eventually we will get to a point where we hydrate for comfort purposes and wait for me to slip away.

I’m tired everyone. I have fought a long and hard fight, but I need a graceful exit strategy now. Of course my heart is broken and my dreams are shattered but I feel in my heart that the most loving thing to do is set myself, Bill, and the kids free. I have to follow my heart.

50 comments:

Ana's World said...

Michelle: I'm sorry you are going through this and its NOT FAIR! All my love and you remain in my thoughts now and in the future...ALWAYS, Ana
P.S. I'll miss reading your blog. Truly.

Jean said...

You shared your regret of not being attentive enough in your nursing years. I found that kind of regret pretty common, sad to say. It is now up to rest of readers to take that lesson upon themselves. Now it is time for me to return to being "more attentive" mama!!

LMP said...

I came across your blog a month or so ago and find that I now read it every day. You gave me a much needed reminder that life is too short and that it isn't always fair. We have to take advantage of every opportunity we get as it may not come around again. I work harder now to make sure we are creating more happy memories each day rather than bickering over trivial things. I applaud you for sharing this journey with the world as many would not have the strength to do so. Even though I do not know you, I will think of you and your words always. I wish you and your family peace.

Patricia W. said...

Michelle, Thank you for the courage and willingness to share your journey. Your reflection today reminds me of how I struggled to be present to my Mom when she was dying. I am sorry for your pain and discomfort and I send gentle, virtual hugs. Blessings for you Journey, Patricia

JC Heery said...

Hi Michelle, I have finally unlocked the code and figured out how to sign on. My heart is heavy and my sadness overflowing right now as I read today's blog. I have continued to think and pray for you, Bill, Amelia and Aidan everyday. Your reflections on your early nursing experiences hit home to me as your fellow comrade in nursing. I too have those images of countless faces of patients I attended to in those first crucial months after graduation while working on Silverstein 10. Through the years I have prayed for each of them --and have forgiven myself for the lack of experience which prevented me from truly being present for those patients--not even an Ivy League education prepared us for such experiences. I realize those early experiences have made me the kind, compassionate provider I am today...but more so knowing you and your struggles has made me more sensitive for my need to truly be present for my patients--to listen to what they need and not what I think is best--I am often chided for taking too long with my patients but I believe that is why they come to see me --they know I will listen and want to know who they are behind the symptom or diagnosis. You have made me a better provider, a better person...I do not want you to suffer anymore...I wish I was the nurse there in those dark hours of night to give you the love, support and comfort as you make your journey home. I pray you know that our loving Father is waiting for you with open arms. I am with you always in prayer...I look forward to our reunion one day and will do my best here on earth to ensure our reunion. All my love to you...Jennifer

smkealy said...

Michelle, my heart is breaking after reading your post today. While I don't want to lose you, I completely support whatever decisions you make today and going forward, and I hope you know that. And rest assured that no one could possibly think of you as a quitter. I am comforted by the fact that you are receiving such loving, compassionate care. It sounds like the kind of wonderful care my mother received in hospice, and I am certain that made her journey easier. You will be in my heart forever. All my love to you, Bill, Amelia and Aidan xoxo

terry said...

Please don't sell yourself short as a caring nurse. While you may not have been able to express your feelings verbally in what you now feel would have been an appropriate way, I can tell by the way you relate the stories that you did care and had empathy for your patients. I do believe that the individuals you cared for would have been able to see this in the young, vibrant person you were and most likely, understood your stuggle.
I do agree with what you say about caregivers being "open" with their patients. As a former ICU nurse, I remember crying many times with patients and families over suffering, a prognosis and/or death. I was so young and nothing ever seemed to be fair. I know now that there is nothing wrong with saying those words.
So now it seems clear, Michelle, that you know that what you need is peace and rest. Please grasp on to all the caring and love that surrounds you to help ease your suffering as much as possible. You are entitled to it and you deserve it!

Tracy said...

I'm crying for you and am so sorry for what you have had to and are enduring. Thank you for sharing your story with all of us and reminding us to live each day to the fullest. I will continue my prayers for you and hope that your remaining days are peaceful and love-filled.

~Tracy

albischof said...

Michelle,

I so wish that I could be there to hold you or wipe your head. Your journey has certainly made all of us nurses have more compassion for the people and families that we care for each day. I pray for you everyday. I wish that you didn't have to have so much suffering. You are such a good person and you deserve only the best. I am happy that you are able to experience all of that care and love from the hospice. You, Bill, and the kids will continue to be in my prayers as you go through this difficult time. Missing you much. Love, Alycia

Annie said...

oh michelle. you're in my heart. i'll be praying/thinking of you.

xoxo.

Becky said...

simply praying for you and yours.

Lori said...

Michelle,
You are a strong and wonderful woman and you have taught so many people so much about living and dying. You are an inspiration not a quitter!

Lori

Amie said...

You hit the nail on the head when you said you wished you had been "mature enough." Well, you weren't. C'est la vie. It does take time, or a whole lot of experience crammed into a short time to see these mistakes we've made. From my viewpoint, you've made up for every silent dressing change with your your work in public health. Your essay on being a "difficult" patient alone will finally get some people seeing things from the viewpoint of the chronically ill. How wonderful! Thank you.

Lori Shaw said...

Michelle,

You are one of the strongest people I have ever known. And this is not fair! Your stories are inspirational and I will treasure them in my heart. I pray for you and your family that you all have peace.

I love you, Lori

jmvdm said...

Michelle,

Not everyone has had the fortune to meet you in person, but fortunately, you are and will stay forever present through your timeless writings.

And what a presence it is! If just one person would have found solace in your words, it was worth it, but as is clear, there are many more than one, and many more to come.

Thank you for that ... and for giving me a great reason to discover Italy!

Jan

Jenn & Eric said...

My tears are flowing. I am always a "find the silver lining" kind of person. I know that you came to this world to teach and educate and love. In such a short life you have accomplished so much. The ripples your life is making in the lives of everyone you "touch" is infinately exponential. Through every difficulty you experience, know that you loved and appreciated. I am sending all my love and wishes for your comfort in these "last days". You will live on forever in the hearts of all you have touched.

Carl said...

Michelle,

Thank you for sharing part of your journey with us. Your blog is something that your children will look back on and read and know exactly who you are and what you stand for.

Thank you for teaching us lessons that are difficult to learn. You are very lucky to have so many people in your life hwo love you and will be better people for knowing you.

Hopefully there will be more postings and today is just a bad day.

xoxoxoxo Carl

Julieann said...

Michelle, you are right, this is not fair---As for being graceful, you are as graceful as they come. I wish I had found your blog sooner--and I wish that you weren't in pain--I wish so many things--but I so wish for you not to be in any pain anymore--I have asthma, so I know just a little bit about the struggle to breath at times--and it is hard. You have made such an impact on my life, and so many others--and your children will be forever grateful for this journal you have so beautifully written. You have fought such a hard battle--and you are one of the strongest woman, I have ever *met*

Many Gentle Hugs and Prayers are going your way!!!

I am praying so hard for you right now!!!!!!!!!!!!!!

Julieann

Melissa said...

I just don't even know what to say. What can I write to comfort someone struggling with life altering decisions? I'm sure nothing that will put a smile on your face or to make you feel any better. Life is not fair and I'm sorry you have to make this decision. I'm with you and your family in spirit.

Thank you for opening the eyes of many!

desert dirt diva said...

michelle,
o.k. i have not been reading your blog very long, but i must say , todays post truly hit home, and i relized you really are gonna die...i'm slow like this.. so i must tell you.. that it has been an honor to go threw this journey with you, you have been a very brave women.. and yes today i cried for losing you......and i want you to know that because after your gone, i don't want to sit and and go damn i wish i had said that or this...so i will continue to read you blog every day till you can not type anymore or you go...but you will be missed ..and yes i will cry...will you go back home, or are you going to stay in hospice????
take care
vicki

amymackin said...

I will miss you, my dear friend. You are brave and wonderful, and I am glad your pain is almost over. I promise to do anything I can for Bill and the children. Please listen for my prayers when you are in heaven.

With great love,
Amy

bethany said...

Michelle,

My heart just aches for you and your family. I want you to know that I am going to my very best to do for other people who are suffering from scleroderma what you did for me and countless others. You will be my motivation to help educate myself and to offer support to others. Thank you Michelle . .

Love Beth

Kelly said...

Michelle -

In the past two months I have often debated leaving you a comment, but never found the words or perhaps the courage to do so. Any encouragement rang hollow against the tremendous battle you are fighting, and I cannot possibly relate to the struggle that you experience every single day.

We live forever in the hearts of those who remember. I am only in my mid-twenties, but want you to know that I will carry you with me for the rest of my life. I feel so lucky to have been a part of your life, even though only through the words you have shared on this blog. It is true, our culture does shy away from death; in part, I believe this has an inability or unwillingness to say goodbye. I don't want to have to say goodbye to you.

But from what I've gathered, you and I share the same mustard seed of faith. I hope that it will allow us to meet one day in a place where you are no longer in pain and finally at peace.

Diane said...

Michelle, you are not a quitter - far from it. You are an inspiration to all! Thank you for sharing your life with us. I am praying for you and your family. xoxo

Cha Cha said...

Oh, my sweet friend. Thank you for sharing your journey with such grace. I am in awe of you, and I have learned so much from you. Thank you.

Please know that you and your family are in my prayers.

Diane said...

Michelle - you are not a quitter! Far from it, as you are an inspiration to us all. Thank you for sharing your life with us. I am praying for you and your family. xoxo

courtney said...

You are not a quitter!!

I have to tell a tale on you...I don't think you will mind.

Bill told me today that you were talking about all these heavy things and then you said, "Bill, we gotta figure out how I can vote!" That is a fighter's spirit all the way, fighting to make your voice heard and improve all of our lives, despite all you are coping with. we're getting you an absentee ballot, so rest easy my dear friend. love you. courtney

grace said...

Dear Michelle,
Thank you for sharing your self and your journey. I have been thinking about you and your family every day in my prayers. I know that your grandmother has her arms wide open to hold you. I am holding you in my heart for always. Love, grace

Rachel E. said...

You'd think I'd know what to say. I used to work for hospice in New York and I have lost two brothers, a sister, my mother and mother-in-law. My sister and father-in-law are now both terminally ill. But the truth of the matter is that there is nothing I can say to make this better. To make this not suck. To make it okay. No one can. It just sucks.

But what I can say is that you are brave. You are generous. You are strong. You are a good mama. You are smart. You are kind and good and decent. And this isn't fair for you or anyone that knows and loves you. I am so very sorry.

My prayer for you will be that you will finish your journey here on earth in peace. That in ending this journey you will begin a new one where you can breathe deeply and easily, take long walks, laugh often, help your children grow in a way only an angel can and that those still on earth will feel your love every single day.

Much love to you.

JOANN said...

Michelle,
There are so many of us out here wanting to reach out and hug you and help you find peace. You have given so much with your words. You have touched my heart and soul. I was teaching my 8th grade religion class telling them that sometimes the bad things that happen to people is not meant for the person but maybe for others. Your blog has been an incredible gift to many. I am hoping to go home to South Bend in November, the GROTTO is calling me. A candle will be lit to honor your life and the lives of those you leave behind. Thank you to your friends for sharing you with us. God Bless you and keep you. JoAnn (Hanlon) Miller Apex, NC

Sue R said...

If you had the time and energy to read a few more books, I'd recommend "Kitchen Table Wisdom" by Rachel Naomi Remen. Your writing today reminds me of hers. She writes about her struggle to become a caring doctor and a healing person in a medical establishment that teaches people to keep their distance. And the stories she shares are beautiful.

The other book that might be helpful is "Midwife for Souls: Spiritual Care for the Dying." I appreciate the author's perspective that this this is a time of transition, where you will be born into another life, a beginning as well as an ending. The child in the womb does not leave without a struggle, but enters into a life he or she could not have imagined. And so it is in dying.

I started working in hospice in my late 40s, and I know I would not be able to do what I do earlier in my life. I had to grow a lot first. And I don't do the hardest tasks. I work with the bereaved, which I find easier than working with the dying. When you were a young nurse, it took courage for you just to silently change the dressings on those wounds you saw. And the fact that you stayed and finished the task meant a lot to those patients, even if you didn't know what to say.

You do have wonderful people caring for you. I'm glad you're in their care. It takes a while to figure out how to make each person comfortable. I hope you hang in there a little longer, but it's okay if you can't. When the time comes, I wish you a peaceful passing with as many good days as is possible. You've fought hard and bravely.

Bird Spot said...

My heart breaks for you, Bill, your children, the rest of your family, your friends, your colleagues, everyone reading this blog. When I get sad in front of my kids about missing my mom, my son (who never met her) always says, "She's right here, Mommy, Grandmama is right here." And I always want to believe him with an open heart. I'm a believer and it fills the hole ever so slightly to think that she is experiencing them from Heaven, watching them grow.

So I wonder what the view from Heaven is going to be like for you, (My friend once told me that people in Heaven don't watch their loved ones on Earth having sex or going to the bathroom!) and I wish there were some way for us down here to know what it's really like. But that may sound selfish and not for us to know until we are called.

Until then, thank you, and please understand how deeply you will be missed...on so many levels.

~Sarah

signshan said...

I wish you and your family did not have to go through all of this struggle. But I hope that I *do* have such a struggle if it leads me to the focus and depth of understanding you seem to have gained. In the meantime, I will continue to try to learn what you have learned.

I hope your heart heals and that you are able to find a way to achieve your dreams, even if it's not the way you'd planned.

With much love and admiration,

Shan :+)

NCgirl19 said...

Michelle,
I stumbled upon your blog about a month or so ago and I must admit that I look foward to reading it everyday...I must also admit that reading today's blog brought me to tears, because it seems like your whole story is rapidly approaching it's conclusion and I realize that you are sharing the final chapters in your life with us. To tell you the truth it just breaks my heart to know that one of these days I'm not going to be able to log on and read your latest blog, but at least I had the chance to read some of them, right?
I know I've never met you but I feel like I know you and I can honestly say that I will miss you and your amazing blogs.
Sorry for this being so long but I wanted to post this because I don't want to regret not posting it later...Thank you for bringing me and everyone else on this journey with you...I'll never forget it. You and your family are in my prayers for every second of every day.

P.S. I'm in school to become a nurse and thanks to you I will try my hardest to connect with the patients I will eventually treat...and I will see them as people with stories, families, & fears and not patients that I have to deal with...Thanks...

boybandreject72 said...

Michelle,

I have been reading your blog for a little over a month now. I left you a comment on a prayer page that another reader had made for you but I wasn't sure if you had a chance to read them.

So I'll leave you another message here!

I find your struggle truly inspiring. I wish you didn't have to deal with the pain and suffering that you're going through. It just shows that life is just not fair but you have to make the best of it. And you my dear, have definitely made the best of it! Your stories of your children and flipping off your husband (haha!) are just wonderful. I wish I could meet you in person just to give you a hug and be by your side.

I just hope you know you are loved by so many, even if most of us here have never actually met you. You're a strong woman and DEFINITELY not a quitter! I will miss you and your stories dearly. I hope your final days on Earth are peaceful and full of wonderful memories that you take with you to Heaven.

Much love,
Dan

Kristine said...

Michelle- I think about you and Bill and the kids often. We are praying for you and holding you close in our hearts. You are not a quitter. You are a marvel- you have touched so many lives- not just with your illness and your stories, but just by being always you for your whole life. Our living is much better because of you. And you leave a wonderful legacy. I love you. Hugs.
Kristine

sarahawl said...

Michelle, you know I have been reading your blog regularly. I don't comment because I can't find the words to write (the way you do!) what I want to say but I had to post today. I think of you and your family many times each day and send so many hopes to you for feeling better and easing this time. You know I love you! You are inspirational (36 comments to this post!!) and you are truly helping people in a way that I wish I could do. Just like me there are many of your friends and others reading who don't even comment but whose hearts are with all of you, all the time. Mine will continue to be with you and wishing you peace and comfort. All my love, Sarah H.

Linda Crispell said...

Your blog should be required reading for medical students.
When my Father made a similar decision regarding ending his battle with disease, I selfishly told him that I would rather have him in pain and alive than not have him at all. Unfortunately, by the time we drove the 5 hours to be by his side it was too late to take back those words.
What has happened to you and your family is not fair,but I am grateful that you shared this personal experience with the world. Your words have changed the way I see living and dying and I wish for you comfort and peace.
Linda

Erin said...

Dear Michelle - I wish you peace. Your children are so very blessed to know that the person they call Mom is so courageous. May it give you comfort to know that in the days and years ahead, you live on in the hearts of all those who love you......God bless you......

C said...

Michelle,
Thank you for writing even admist your daily struggles. Your wisdom and and insight will forever impact me and my interactions with my family and friends. I'm grateful to have known you through your words. (I do recall seeing you years ago at STM when you were starting a ministry). I know The Lord will abundantly provide for you and your family. Bill, Aidan, and Amelia will be fine - afterall: they have you in them. My prayers are with you and your family. Soon we know the Good Lord will be holding you and all will be at peace.

Michelle said...

Michelle, While I miss you and think of you often, the latest news of you being in hospice caught me by surprise. I read your blog in spurts, so hadn't caught up in a while. When Nancy forwarded a message to me, I hadn't read a message since you first began to gain weight - so I was quite saddened to catch up.

I'm very sorry you didn't get the quality years you wanted and deserved from the tpn, but you have fought so hard for so long, the last thing anyone would ever consider you is a quitter. You were so amazingly courageous throughout this entire journey. You have lived a rich, rich, life. And you have inspired so many people, including me, to live their lives.

And I’ve been a horrible friend – reading your blog – and often thinking ‘what can I do to help them out?’, and never coming up with anything that seemed good enough. At least now, I can say ‘Goodbye’ and let you know that you have had a great impact on my life. I will think of you often and it will always remind me to learn to live. I truly think you have touched more lives than most of us will if we live to be 312.

Love and peace to all of you, Michelle

Lexi said...

MIchelle,

I just found your e-mail address (many weeks after you gave it to me--long, unimportant story...) I was going to e-mail you directly so we could have a private conversation, but it dawned on me how selfish that was. All your energy should be saved for this incredible blog for everyone to share.

So far today, there are 41 comments to today's post. Clearly I cannot add anything that hasn't been said, but please allow me to add my voice to the chorus. You are an inspiration, and your words beautiful. I will hold you in a special place in my heart. Although it has been years since I have seen you, prior to finding this blog, I always looked forward to getting your annual Christmas letter, because I loved the beautiful way you wrote about your family. This blog has been a real gift. I thank you for the opportunity to share with you what you are experiencing, no matter how raw and painful.

I send you all my love. Lexi

P.S. I know your Grandmother will help you along the way, and if you bump into my Mom, say hi. She is full of love to spare and always loves to help (and trust me, there will be plenty of laughs in the process!). oxox

selicato said...

Michelle, I was crushed to read your blog yesterday even though I knew it was coming, but wishing not so soon. It is just a selfish thought though and I know the battle has been too long for everyone.

Remember you are not a quitter, you have always been a fighter, with such grace and dignity, such poise, wisdom, and strength. You are forever my inspiration, as Bill and the children are. I have been praying for your comfort, peace and mercy, not to mention for your children, Bill, your mom and family.

Your blog is a beautiful gift you have shared with everyone, and something we won't ever lose sight of...your wise lessons learned, funny stories, traditions, inspirations...

Most of all, the best gift has been your precious friendship all these years. You've always believed in me and in who I am, even when I doubted myself. I love you and pray I will see you again, in this life, and the next. I love you with all my heart. Grace

firebrand said...

I just wanted to say thank you. This journal is an incredibly intimate account of both astounding joy and inconceivable sorrow, and I'm privileged to have access to such an account.

Both you, and your family, have my thoughts.

Ann Marie Cinque said...

Michelle,

My heart is aching for you and your family. I wish you peace and comfort.

You know that you and your family are in my thoughts and prayers.

All my Love,
Ann XOXOXOXOXO

Sharon Sulecki said...

Michelle,

The word quitter should not even be in your vocabulary. You are one of the strongest people I know. Just follow your heart and you will find peace. You have all of our love and support!

My thoughts and prayers are with you, Bill, Aidan, Amelia and your family.

Much love,
Sharon
xoxox

Connie said...

Michelle,

You are absolutely not a quitter! You are so far from it! Deciding that you have had enough pain is not quitting, and we all support you and understand that you are ready.

You have been a wonderful friend, an inspiration, a teacher, and all kinds of other things I can't put into words. Not just with your fight with scleroderma, but everything you do is inspirational. The way you parent, your writings, the way you fight for your rights and others, and so much more! I am so blessed to have known you! And I love you!

Connie

Rosie Bonner said...

Michelle,

Thank you so much for your beautiful blog. I am a mother of small children myself, and a home care nurse (with a bachelor's in French from Bryn Mawr College back in the mists of time), currently running a new program for new grad nurses starting their careers in home care. I sent the nurse interns all the link to this blog because you talk about issues that are so close to the beating heart of health care as it ought to be. I think of you a lot and am wishing you love and comfort and peace and joy in your journey, whatever it consists of. Every nurse hopes to Make a Difference. I hope that you know that you are doing that very thing in a gigantic way, even now.
Much love,
Judith (=Rosie Bonner)

Meg said...

Michelle, I'm very sorry that I am just now finding your blog, your writing is so inspiring and honest. I'm sorry that you had to leave your family, but I'm glad to hear that you had such great nurses. I am a nursing student at UPenn, I'm sure you would be happy to know that I discovered this in an email sent to the SON all students list. I didn't realize that you went to Penn until I was looking at the slide show and recognized the graduation hood you were wearing. This entry really hits home with me, I realize that while I did spend some time talking with patients and their families during my internship last summer I could have done more. I will try to do more try to be more available to patients and their families and learn about ways to help suffering patients and their families. I think we get wrapped up in the task sometimes and forget why we got into this, to help people. I hope your family is coping as best they can and getting the support they need. I will pray for them and try to remember you words when I work with patients. As my instructor says they are people first, remembering that makes me a better nurse. Thank you for your insight~Meg

Erica said...

After reading the CNN article today, I found Michelle's diary. WOW. I am blown away by wife/mother/loving friend and mentor's words. I sincerely hope that your family is doing well, and that time has healed...always with a bright, yellow light shining in your minds.
My mother has the same disease (recently diagnosed), so, this diary is feeding me insight--although sad, and knowing that there are many degrees of Scleroderma,I am learning and gaining strength.

I'd LOVE to read this diary in book form. Michelle's writing is extremely eloquent and honest.

Your truly,
Erica