A Life After Sepsis
Today I am re-publishing one of the most-read articles on my blog. Since this post was first published about two years ago, Wendi's honest and life-affirming report has found an ever-increasing audience. Wendi is a sepsis survivor and quadruple amputee. And she openly talks about her physical, mental and emotional challenges. As this has been such an important source of information for many - especially young - people with a limb difference, I decided to publish Wendi's post again.
I've Always Been A Fighter. And Now I Was Fighting Survival
My name is Wendi Locatelli and I am 36 years old. I was born and raised in Eureka, California, where I enjoyed outdoor activities as well as many different sports. After high school I moved away to pursue my dental hygiene degree. Upon graduating I started my first job at the age of 20 and worked as a dental hygienist for 14 years, settled in Woodland, California, met my husband, and had my three children. During this time I continued to enjoy teaching exercise classes at a local gym and began participating in local running races culminating in the California International Marathon in 2008. I enjoyed water skiing, snowboarding, and almost any extreme outdoor activity you could name.
In May 2016 I developed an infection which led me into the fight of my life. I was diagnosed with septic shock and given less than a 1% chance of survival. Sepsis is a secondary infection that occurs when your immune system cannot defeat the original source of illness such as pneumonia or the flu. When your body cannot fight off an infection such as this one, your body systems start to shut down one after another. My husband and family knew I was a fighter and believed in my will to live. At one time my heart stopped, I was hooked up to a breathing machine, and my kidneys were in complete failure. Against all odds I survived only to watch my legs, arm, and fingers fall victim to the septic shock. When I awoke from my coma I was staring at black fingertips, an arm that was black from the elbow down and swollen legs that were dark purple. Some of my toes had already died and the likelihood of amputations became more real with each passing day.
An Amputation Felt Like Taking Away Part Of My Existence
Being an extremely active individual my entire life, having doctors tell me that my feet are going to be amputated was like taking away a part of my existence. My feet had been the key to everything that I had ever known, and they were what helped me to enjoy my life the most. I didn’t know what I was going to do, or what the rest of my life was going to look like without them . My family felt differently telling me that they would rather have me here than not have me at all. Together we would do everything that we could to make sure that I was able to do all of the activities that brought me joy, again. A few weeks later I had both legs amputated below the knee, my right arm below my elbow, and the fingers on my left hand with the exception of part of my thumb. Lying there in that hospital bed there was nothing that I could do on my own. I couldn’t roll over onto my side. I couldn’t go to the bathroom. I couldn’t feed myself. I lay there motionless, talking with my family about what was to come.
One of the hardest things I have ever had to do in my life was to tell my children that I no longer had hands and feet. How do you do that? There is no manual or textbook telling you the proper way to address your family. My kids were 2,3, and 4 years old when my limbs were amputated. How do you explain to them what actually happened to you in a non scary way. They had already been through enough turmoil. Their mom had disappeared from their lives without even saying goodbye and they had no idea when I would be back. We struggled until the day finally came for us to unveil my new body. We surrounded them with all of our close family and then my husband wheeled me into the room. The first words out of my oldest sons mouth were “mommy where are your legs?” Followed by “and your hands?” I gently described to them that I was lucky to be there and that my arms and legs had an accident. When the doctors were trying to save me it was hard for my arms and legs to breathe and so they died. I told them that god was taking care of my hands and feet for me and that he told me to stay and take care of my kids because it wasn’t my time to go yet. I grieved with them. I kept my chin up. I got out of bed every day to show them that I was strong both physically and mentally and that I had earned the privilege of being their mom. I showed up for them in every possible way. It was because of my children that I had a reason to survive and it was because of them that I worked so hard to become as independent as possible. They give me a reason to keep living and pushing forward even when it’s hard and painful. I do it for them and I do it for myself because when I imagined motherhood it did not look like this. I do my best, to be the best for them so that I don’t feel like I gave them anything less than they deserve. My children are central to my story and help to define who I am and my role in this life. One of the best parts of my life has been being a mom, and although challenging, I have loved every minute.
The Blessing Of A Strong Support Network Of Family And Friends
After two months I left the hospital to return home. I needed a care giver during the day while my husband went back to work. My family resources had been exhausted, and I was not open to the idea of a stranger coming into my home to take care of me. I needed someone familiar and comforting to help me to move forward on my physical and emotional healing journey. While in the hospital I had family and friends by my side constantly. I was amazed at the love and support I was shown. It still shocks me to this day that I was able to impact their lives in such a positive way that they set their busy lives aside to show me the importance of mine. These people would soon prove to play a very large role in my life. Before my illness I hardly ever asked for help. One of the hardest things that I had to adapt to was actually learning how to ask for help. Once we realized that we had plenty of friends and community members that were ready and willing to help me during the day we had a plan. Soon I had a whirlwind of visitors helping me every day with my routine tasks as well as bringing me to doctors appointments. I believe that without this support my transition into my new “amputee life” would not have been as successful. Developing a routine for my children during this organized chaos was a struggle. I continued to have so many doctors appointments, rehabilitation therapy and other appointments every week that it was not easy to give them the stability that I would have liked. I believe that we did the best we could and that kids in general are amazingly resilient. We are getting ready to enter our third year since I had my amputations, and we are just now getting to the point where they have a regular weekly routine. I am able to bring them to school as well as pick them up. They know what to expect and that I will be there. This is extremely important for them as well as myself. This was my job before I got sick. One day I was just gone, and now I am back and ready and willing to do all that I can to make their life as “normal” as possible.
Being Open And Honest With Your Children
When it comes to the questions my children have about the circumstances of my illness, I try to explain things in as simple a way as possible. I usually compare it to a concept they will understand. The more we talk about it the more common it becomes. For example, as I am sitting here writing this my children came in screaming to me “mommy your arm came back” because my cosmetic arm was being modified and was shipped back to me through the mail. Comments like this constantly pop up in our life. I cannot help but laugh because I always imagine the same thing being said around people who don’t deal with limb loss on an every day basis. I always think to myself “did I ever imagine this happening?” The answer is no, but for some reason or another I always find it funny. I believe this humor has allowed me to bridge a gap between my injury and my children. I do continue to get upset about missing my hands and legs but by watching me make light of it and laugh, I think they are able to find reassurance in the fact that although our situation has changed everything is still going to be all right. They have food on the table, clothes to wear, a roof over their heads and a mommy who is alive and loves them so much! By making my limb loss a constant part of our every day conversation it has made it seem as though it is an annoyance rather than a burden. They know mommy doesn’t have fingers so they need to help me open things. It has given them a sense of importance as well as understanding that I do the best I can to my ability and anything after that, they get to be there to help. It is also a wonderful lesson in humility on how and when to ask for help.
Since surviving sepsis one of my greatest fears has been my children being picked on because of what their mother looks like. I knew in the beginning that I could not stop this from happening. I also knew that knowledge is power. When my oldest son started kindergarten I made a point to go in once a week if possible to help in class. I was in a wheelchair and did not have prosthetics at all. In the beginning the children did not know what to think but I was able to slowly coerce them into asking their own questions and examining closely what had happened. As I received my prosthetics I always did a “show and tell” about how they worked and how they helped me to improve my life. I made sure to showcase my child's roll in helping me daily and their knowledge about my prosthetics. I made sure to praise them in front of their classmates and to make the interaction as fun and memorable as possible.
Overtime I found that my child as well as their classmates always looked forward to these visits since it was something new and exciting. I still get asked on a regular basis if I brought anything for “show and tell.” I know that I am glorifying a situation that is not ideal but to see the understanding and acceptance in these children’s eyes is worth it for me. My hope is that someday they will grow up and have compassion and understanding for those in the world who are not like them. I also hope that they can see the beauty and strength in what may at first appear different and scary . Education about prosthetics and limb loss is so important because the large majority of the population has very limited if no understanding about an Amputee’s life and how their prosthetics work. Before my illness I was one of these people. Now I make a point to try and put it in the forefront of conversations so that there is more understanding. I want not just children, but adults to feel comfortable asking me questions. Our society is so worried about hurting peoples feelings, but I would rather be approached with a question and allowed the chance to educate someone rather than have someone shy away from me just because I am different from them. My children don’t see this difference. They are used to their mom in all different versions. They accept me for who I am and know my heart and soul. The appearance of my body no longer affects them.
Yes, I Am Struggling. But I Focus On The Positive And The Difference I Make
Disciplining children as an amputee has proven to be an uphill battle. Once your children figure out that they can run faster than you, and you can’t catch them, it comes time that you realize you have to outsmart them in a different way. In many ways my kids are physically stronger than me and so I cannot force them to do certain things, such as go to their room. I have had to learn how to use my words and not worry about having people hear me discipline my children when we are in public places. Kids are smart, they know how to test your boundaries, and they do it well. One of the things I hate the most about parenting is the actual parenting part. I am learning that consistency is essential and that even though there are times that their discipline hurts me just as much as them, that it is needed to establish a healthy respect and family. I truly believe that the small things in life are the important ones because these are the moments where life really happens. I know I will look back on the giggles, tears and everyday activities and know these are what made my life great.
As a parent with limb loss the struggles of not being able to help with zippers, hair ties, buttons, and shoelaces amongst other things I cannot do, sometimes feels insurmountable. Admittedly I can do some of them if I try, but many times I find it easier just to ask for help. It usually seems that most people whom I ask especially if it’s a stranger get more flustered than I do myself. That being said I often remind myself to look at the big picture. I am still here. I get to make a difference in my family’s lives for the better. When I become so focused on the individual negatives it can make me lose sight of the multitude of positives. This is the key to overcoming any sort of negative idea about your disability. If you can put it in relation to what could be? And when I ask that question I mean the worst. When you take a look at all that you do have, you realize how you are truly blessed.
I am not going to tell you that I don’t struggle. I struggle daily with body image issues. My grafts, my scars, the deformities that were left after all of the dead tissue was removed off my body, it haunts me daily. Sometimes I can convince myself that I just look like everyone else. This tactic has gotten me through summers in swimsuits and parties with dresses. I spent the entire last year with 3 expanders in one leg filled with up to 2 liters of fluid in preparation for a reconstructive surgery. I looked like I was suffering from some type of tumor disease. I could never even consider a body powered arm prosthetic because I could not stand the idea of one more thing strapped to my body. I continue to have neuropathy near my amputation sights that varies daily on its pain scale. These mental and physical issues when combined with raising children can be a ticking bomb. I have learned that I need more rest. I simply just don’t have the stamina that I once did. If I am well rested I can deal with my pain better. I also have more patience with my children as well as my prosthetics. I try my best to not put myself down. I really am doing the best that I can, so any voice in my head telling me different needs to be silenced. I try to not live in the past. Nothing I can do will bring my limbs back. I still get upset when I think about all of the things that I used to be able to do. Now I get to ask myself how I am going to make these things happen again as a quadruple amputee...and in doing so blow people away!
From the time I was young I have always been the type of person who loves a challenge. The harder it is the more meaningful the victory. What doesn’t kill you makes you stronger. I believe that
without this competitive will and stubborn streak that resists anyone telling me that I can’t, I would not have survived. I try so hard to convey the same never give up attitude to my children,
so that hopefully one day they can overcome anything that is set in their path. I continue to help my husband coach their sports teams, practice with them, and show them anyway I can what
perseverance and hard work looks like. I want to experience these things with them instead of watching someone else do it. Anytime that I am able, I participate because I know all to well that we
don’t always get second chances.
A Loving Husband, Acceptance And Personal Strength Are Key To My Journey
Of course none of this would be possible without my husband. From the time I fell ill he has juggled being a father, husband, caretaker, and whatever else I needed him to be. He agreed to take care of me so that I could leave the hospital early which looking back was a very difficult task. He has become an expert in Wound Care, and has had to learn to juggle even more. He has adapted to our new situation extremely well and always makes sure that we are taken care of. I can tell in his actions that he is constantly trying to make my situation better and only wants what’s best for me. Inside I know it hurt his heart just as much as mine if not more to have watched my limbs amputated. I know that when we got married his picture of life looked a lot different as well as did mine but he has stood by my side through better or worse and I know will continue to be there for the rest of our lives. I am forever indebted to his devotion and never ending love.
My life since sepsis has revolved around strength, both physical and mental, setting goals, and perseverance. Since leaving the hospital I have dealt with the emotional acceptance of my
situation, the struggle of being a mother, dealing with finding my purpose in life, and a whole roller coaster of unforeseen challenges. I would not be here today without the support of my family
and community. As I continue forward on my journey I hope to set an example of inspiration and positivity not only for my family but for all those around me. I hope to one day compete in the
paralympics, continue to travel with my family, complete a half Ironman, write multiple books, and hike half dome again to revisit where my husband proposed.
Guest post by Wendi Locatelli. Wendi is a sepsis survivor, a quadruple amputee and mother of three. You can follow her on Instagram.
Desire to have a child as an amputee
(amputee parenthood special I)
Today we start with another special. A series of articles dedicated to a one special topic, one specific challenge or one impressive person. And this week it’s all about being an amputee parent. Even without a limb difference, the idea of suddenly being responsible for a child can be daunting. Immense joy is regularly mixed with feelings of fear and being completely overwhelmed. Often even more so if you are an amputee. So throughout the course of this week we hear from four amputees, learning about their thoughts on parenthood. Jasmin, a young women from Germany with an above knee amputation - and a regular contributor to The Active Amputee - kicks-off our Spring Special. read more
Pregnancy after surviving an avalanche
(amputee parenthood special II)
Joanna lost her leg in a mountaineering accident. She has what is called a Chopart amputation. That means that she has retained a load- bearing heel bone and heel pad. However, due to a needed shortening her amputation presents as a Symes (which is an amputation through the heel bone). Joanna can walk short distances without a prosthesis. Only a few years after her accident, Joanna is expecting her first child. In this personal article she shares her experience of being pregnant while still getting used to her new life as an amputee. read more
Oh baby, we are going to have kids
(amputee parenthood special III)
Oh no! This can’t be right! I looked at the positive home pregnancy test again. Come on, make that color change some more. I sat still for a while and waited. Pregnancy was not on my list of things to do right now. Nine months earlier I’d lost both legs above the knee and my right arm just below the shoulder in a train vs car accident. I learned to walk with prostheses using a quad cane and was planning to move back to Los Angeles where I would live by myself and finish the last nine months of my Radiology residency. My thump-thud, toy-soldier walk was loud and looked funny but got me where I needed to go. Doing things with one hand was becoming easier. But am I ready for a pregnancy? read more